A Day in the Life of a Migraineur

A guest post by John Martinez with Axon Optics…

A day in the life of a migraineur is not a normal day. It’s like a day of playing dodgeball, but if you get hit, you have to call out of work and live with head-splitting pain. Migraine triggers can appear at any time, and the migraine can rear its ugly head on a moment’s notice. 

Living with migraines can sometimes feel like going on vacation, without any of the relaxation of going on a vacation. You need to check the weather, make sure you’ve packed everything you need, and always have a backup plan in case things go south. 

If you have a friend or family member that experiences migraines, this is worth a read. A day in the life of a migraineur revolves around migraines: avoiding them, treating them, and explaining them to others. 

Avoiding Migraine Triggers 

A day in the life of a migraineur often includes dodging triggers. The list of migraine triggers goes on as long as a migraine itself. Any of the following could also cause a head-splitting migraine:

  • Hormonal changes 
  • Changes in the weather
  • Stress 
  • Certain levels of physical activity
  • Strong smells
  • Bright lights
  • Loud music 
  • Dietary changes 
  • Caffeine or alcohol 

 

A day in the life of a migraineur may include turning down an invitation to happy hour, staying inside when they want to go outside, or trying to change an event to a more quiet and low-key location. All the while, the migraineur is attempting to stay calm, because too much stress may just bring on the migraine they are trying to avoid. 

Throughout the day, migraineurs may be recording their diet and activities in order to discover and control their triggers. Not all people with migraines are triggered by the same things – the process of pinpointing triggers and then avoiding them can take up an entire block of a migraineur’s day. 

What’s In A Migraineur’s Purse? 

It’s not always easy to dodge these triggers; how are you supposed to know when a change in barometric pressure is going to cause numbness and pain throughout your entire body?  

If migraineurs can’t avoid migraine triggers, they will have to treat migraine symptoms. This means carrying a bag with everything they need to deal with migraines. 

Medication 

Over-the-counter medications offer some of the quickest relief to migraines. It’s always good to have your painkiller of choice on hand when symptoms start to arise. Over the counter medications include Aleve/naproxen, Excedrin Migraine, ibuprofen, and Motrin migraine. 

For those of us who have severe, chronic migraines there are also prescription medications that you can take when you have a migraine coming on, imitrex being the most commonly used. There are quite a few options for daily medications and even some shots that are supposed to work for a month at a time, but these are new and not always covered by insurance, like any other med, they don’t work for everyone.

Hormonal medications may also help to regulate migraines – but this is not applicable to everyone. Female migraineurs should talk to their doctor about taking contraceptives or other hormonal medication if they have migraines. 

A Cold or Hot Compress 

This lifesaver can also provide relief in a pinch. Cold or hot compresses against the back of the neck or on the forehead can help to numb some of the excruciating pain of a migraine. Unfortunately, it won’t treat blurry vision or other types of numbness. 

Sunglasses

I recommend FL-41 Glasses specifically!

Migraine glasses, also known as FL-41 glasses, have begun to give a lot of migraineurs hope. These rose-tinted glasses have been crafted to block out rays that trigger photophobia (sensitivity to light.) They can be worn indoors or outdoors. Migraineurs who don’t enjoy wearing glasses can order FL-41 contact lenses.

If you have ever experienced photophobia, you probably get significant relief by wearing sunglasses indoors. However, research shows that over time, it can make your light sensitivity WORSE. Maybe too much of a good thing really can be bad? If you want more information on this, check out, “Why Wearing Sunglasses Inside is a Bad Idea”   by John Martinez at Axon Optics.

Caffeine – coffee, coke, etc.

Like hormonal medication, caffeine can either cause migraines or treat it. A small can of cold brew or a soda sometimes helps migraine patients, but this is not a widely successful trick and is definitely not a long term answer. 

The Dark

Sometimes nothing helps with a migraine and you are stuck laying in bed in the dark, wishing away the pain and nausea and whatever else comes along with your migraine, everyone has their own “aura” or mix of symptoms – light sensitivity and sound sensitivity are some of the most brutal triggers, so stepping out of your cave, trying to turn on a light to focus on a task, or even just looking at your iPad to Netflix your migraine away can cause a massive wave of killer discomforts of all kind.

Eye masks/sleep masks and ear plugs are your friend. Noise machines with peaceful background sounds like fans, white noise, rain, etc. can also help block out the more painful noises and give your brain something to focus on that ins’t “dangerous.”

Support

Most importantly, don’t fight alone, except when you’re mid-migraine and can’t stand even the smallest of noises.

Whether you find your support through religion, family or friends, your dog, or an inspirational playlist on your phone, it is important to have something that helps you stay positive and hopeful. There are also support networks on facebook and other social media sites that can make a big difference. Of course, having a supportive doctor is also very important, so keep that number in your wallet, too.

…But Don’t Take Our Word For It 

Every migraineur has a different experience. While some people feel like an ice pick is piercing their temple, other people experience numb fingers and blurry vision. (These are real quotes, by the way.) Some people may experience symptoms for mere minutes, others, for hours or even days.

Whatever it feels like, it doesn’t just feel like “a headache.” Lucky for most, you won’t ever have to feel this pain, but part of being a migraineur involves telling people that migraines are not just headaches, that they are serious, and that they need more awareness, more research, and more treatment options, much like any other chronic, misunderstood illness.

 

Guest blogger John Martinez, in association with Axon Optics, edited / posted by Positively Rachel as an awareness post for chronic migraines

Thank you, John for sharing with us, as always I am excited and grateful to have a guest blogger!

If you want to read more about migraines and how they affect daily life, you can check out my own work on a previous post, “Chronic Migraines: More Than Just a Headache” or “Kids Get Migraines, Too!”.

Strength for All; A NTCP Shirt Fundraiser

In October of 2017 I had my GJtube surgically changed into two separate tubes – a jtube and a gtube – after months of tube trouble due to my severe dysmotility throughout my GI tract. This surgery was insanely painful due to complications brought on due to my EDS, so my recovery was long painful, and during that time I relied on my parents for EVERYTHING. I couldn’t sit up in bed on my own, couldn’t walk, shower, brush my hair, or seemingly do anything else because all of these movements require abdominal contractions/tension and every time that happened I was in excruciating pain.

It was during that time that I began thinking about how lucky I was to have my 24/7 support team who were there for me always, no matter what, no complaining, and I just couldn’t bear the thought of anyone going through this alone, so I decided to be there for every tubie I could. Chronic illnesses are one of those “find out who your real friends are” situations and it can be brutal and shocking seeing who it is who puts the effort in, my goal is to step up and be that person when I can, but also to encourage others to do the same; so two years and lots of work later, over 300 packages have been sent out to first time tubies. 

To celebrate this milestone we’ve started a shirt fundraiser to raise money to contribute to Newbie Tubie Care Packages! 

Living with chronic illnesses or other conditions that cause one to be unable to eat enough to sustain themselves on their own and cause the need for a feeding tube is incredibly challenging, and that’s a massive understatement. Imagine life without your favorite foods , without the ability to go out for ice cream or coffee or a drink with friends, not sitting around the table and eating thanksgiving with your loved ones, having to come up with options not involving food for social gatherings or first dates, and explaining to people why you aren’t eating or what that little knobby thing on your tummy is.

Feeding tubes require incredible strength and self awareness, they are life changing, but they are nothing to be ashamed of, they are a gift that gives life back to more people than you would ever imagine – young and old, boys and girls, and due to so many different causes or conditions, feeding tubes are so much more than just a life sustaining piece of plastic, so join us in spreading awareness and celebrating year 2 of Newbie Tubies as well as the gift that so many of us are given through feeding tubes – the gift of nutrition, energy, and a life we may not have had without them.

Whether you’re a tubie or not, purchasing a shirt shows your support and love for tubies and contributes to our care package program that sends packages (free of cost) to first time tubies. No matter where your strength comes from, these shirts represent that strength.

We run on donations and these shirts are super cute, so it’s a win-win! You do not have to be a tubie to be Tubie Strong!  Purchase a shirt for yourself and wear it proudly, no shame, just strength and power in your self and appreciation for the gifts we often take for granted.

Thank you so much <3

*Link below! Currently open until Nov. 21st.*

**SHOP HERE!**

you can also donate to PayPal @ rajinone@aol.com or check out or wishlists on Amazon or Etsy!

Love & Gratitude,

Positively Rachel

Medical Trauma: A Special Guest

Medical trauma and medical PTSD are two of the most under-identified and misunderstood occurrences in today’s medical system, even in our own developed, educated country. Doctors are supposed to be trustworthy and well intentioned, they even take a vow to do no harm. From day one we are taught to put trust in doctors, nurses, and any other medical professional, trust them with our personal thoughts, habits, and of course our bodies,  our minds; hospitals and doctors offices are supposed to be “safe zones” if we need help… but is this always the case?

From my years of battling chronic illnesses I’ve seen TONS of doctors, specialists, nurses, xray techs, med students, etc. and it’s shocking how some of them treat patients. I can give you handfuls of personal experience with negligence, betrayal, false accusations and biases, and personal traumatic experiences brought on by the medical systems, doctors and nurses themselves. I’ve gotten to a point where I have anxiety over  new doctors, a true fear of admissions to the hospitals who are said to be there for treatment, help, healing. I’ve been denied medical treatments by insurance agents who don’t even have a degree in medicine or pharmacology, but choose money over my quality of life. There’s so much more to the medical system than the average person imagines, and the impact reaches far beyond the exam table.

To share another perspective, I’ve been given permission to quote the testimony of one of the kindest, most respectful and compassionate fellow “spoonies” that I have gotten to know thanks to online networks that let us find one another with just a hashtag.

So, thank you Nicole, and here we go…

“Ever since I started struggling more and more with my medical trauma and also was recently officially diagnosed with medical PTSD so I wanted to spread awareness about how traumatic this chronic life can be. From doctors treating you badly, to traumatic surgeries or procedures to doctors not believing you to life threatening situations there are unfortunately many possible traumatic parts of being sick and/or disabled and it needs to be talked about more.

Vivid nightmares. Anxiety and panic attacks. Depression. Avoidance. Flashbacks and intrusive memories. Always on guard. Easily startled. Trouble experiencing positive emotions. Loss of interest in things that you enjoy. Trouble sleeping and concentrating. Irritability. Guilt.

These are just some of the things that come along with medical trauma or PTSD.

Unlike with some other types of trauma, for us who are complex chronically ill and/or disabled patients we literally cannot avoid our trauma.  We cannot avoid hospitals, doctors, medications, treatments, surgeries, etc. This makes coping with and healing from medical trauma very very challenging. For me even little things like doing my daily line and tube care can bring on flashbacks of sepsis hospitalizations and awake, painful IR procedures and things like new patient appointments can bring on severe anxiety about possibly not being believed. This can cause us to generalize all our trauma and have anxiety and PTSD symptoms around everything medical not just the traumatic event/s. For me I get awful anxiety when I have any kind of medical appointment due to the trauma being brought back through intrusive memories, feeling unsafe and a strong urge to run/get home ASAP, agitation, impatience, feeling like I may literally explode from anxiety and panic and much more.

All trauma, no matter what it is or how severe, is real, valid, important and is deserving of healing, therapy, support, treatment etc.

Medical Trauma and medical PTSD needs more awareness so doctors, nurses, medical professionals etc can be aware that it exists, that is a huge struggle for the patients that deal with it every single day, and learn how to help it and do everything they can to try to prevent it.

We have to strive to make healthcare *Human*Care so that medical trauma and PTSD stops for good and no one else ever has to go through such a horrific condition again! Maybe if medical professionals treated us as actual HUMANS – not just another medical case – many of these traumatic situations could be avoided.”

 

Quote by Nicole P // IG @itsapotsielifeforme

 

Positively Rachel

 

Medical Madness: Survival of the Introvert

I’ve always been a bit of an introvert, my parents often tell me that when I was young, my teachers said I hardly spoke a word, I was polite and hardworking, but quiet as a mouse, which my parents thought was odd since I often talked a lot at home J I’m shy and often have trouble making friends, I have always hated confrontation or having people be upset with me. I worry about running late or being in the wrong place at the wrong time… I’ve got a lot of thoughts and opinions and knowledge, but being introverted and having trouble sticking up for myself in tense or questionable situations, it can be a major downfall when you’re living like I do.

Getting sick at such a young age with conditions that so many doctors don’t even know about let alone know how to treat. Since I was young and still living at home, my parents were always with me at doctors appointments – still are today J — and they were able to help me express things fully and ask all of the questions I needed to, ask for help with whatever needed more attention, but I still often got overwhelmed.

Being sick so long I’ve begun running my doctors into retirement, and of course with that comes the need to begin the draining search for new doctors, a task that brings difficulties in many ways. You’d think that after almost 8 years I would be able to do this on my own, to handle doctors and keep focused and calm and get everything out of it that I need, but that’s just not the case. You never know what you’re walking into with new doctors; each has their own protocols for testing and treatments, they believe in different approaches, and you have to explain your history in detail, which gets longer each time.

There are so many biases against girls like me with “invisible illnesses” simply because of my age, gender, and appearance, and the worst part is that those biases and judgments don’t just come from stupid high school kids or young adults, they come from doctors, from insurance, from pharmacies, from all of those who are supposed to be the ones making my life, making my body at least feel a bit more comfortable, a bit more active, a bit more NORMAL.

After a few bad experiences with doctors and nurses and hospitalists, some being members of my own care team, the medical professionals who hold my life in their hands, and that kind of brutal betrayal can lead patients like myself to extreme anxieties and even medical PTSD, which makes finding new doctors a terrible thought, a stressful time for me, and on top of that, I have to be brave enough to get through these appointments feeling like I’m in good hands.

Doctors are supposed to “do no harm,” but that concept is flawed and misinterpreted sometimes; “do no harm” isn’t a pledge meant just to protect us from doctors intentionally causing harm, doing things to make us sick or cause us pain, etc., it means do all you can to help your patients no matter who they are and what they have. There’s so much that happens behind the scenes of the medical system, doctors with prejudices who feel they have a right to be rude and judgmental and negligent when we know something is going on and we are asking for help. Negligence is a crime just as serious as purposeful, physical harm.

Why do you get to decide what I’m feeling, what the symptoms or side effects can or cannot be based on a decade old case study instead of putting trust into the patients, the ones living this, the ones suffering every day while the professionals get to wash their hands and go home without another thought of how their actions or lack there of are affecting us. I may not be a medical professional, but I am definitely a chronic illness expert, and if doctors could truly understand that, we could work together, creating trust and mutual respect.

A wise woman once told me that I need to remember that doctors work for patients. I think doctors forget that and take advantage of their position and their capabilities, the things that only they can do or get their hands on. We need doctors, we need the resources they can give us, but they need us, too, and they need to keep in mind that those of us with chronic illnesses aren’t your average patient, and we know our stuff.  No one knows chronic illnesses better than the patients themselves.

Since there are no options for spoonies to join the medical field based on our personal knowledge and research, it would be incredibly beneficial if our doctors and insurance agencies and dieticians, pharmacists, etc. would take us seriously and use our advice, consult with us more so than just making the decision and saying that’s that.

We do so much of the work, so much of the research, and all of the first hand experience, yet we still rely on the “professionals” who are making these decisions without listening to the answers we are offering.

Sponsor a Book for our Little Tubies

I grew up with two early childhood educators, so books have been a staple for me since day 1, and that is a true gift my parents gave me. Books help us learn about the world in a fun, visual, and age-appropriate /understandable way, teachings us the simplest of things like letters and animals to right and wrong, to all you can do when you grow up, and how to be the best YOU that YOU can be, whatever that means.

Books are part of what help us learn about new and different things we may come across, and it’s important to give children resources to help them be aware of all of life’s diversities and that being unique is never something to be ashamed of, so authors include all sorts of characters and situations in books that help prepare kids for life, even if the kids think it’s all just a story…. What about books for kids with illnesses? Children with wheel chairs, bald heads, or feeding tubes?

When I started Newbie Tubies I had a goal to help all of my “newbies” have all of the important information and to feel as supported as possible, and to learn love and acceptance for their new gadget and for themselves. Some people have a harder time than others with this, and that is completely fine, but sometimes you need to let those around you help you get to that point by letting them support you and accept you and your tube for you to see that your tube doesn’t change you, it just keeps you around…

Well, back to books, sometimes it can be hard for our littler tubies to adjust when they go to school and all of a sudden are thrown into a world where peers are eating lunch and bringing in cupcakes for birthdays and you’re no longer in the safety of your home, but both tubie and classmates start to see differences, even at a young, young age, and it’s time to bring in the books to help normalize tubes, to make all of the classmates learn through the avenue they know best – books.

For the same reasons, picture books about tubes can also be very beneficial for adult tubies who have young children or work with young children. Visual, audio, and hands on awareness and normalization is more than we can ask for, and starting young, starting by reading these books to the next generation is just awesome.

If you’re interested in sponsoring a book for our packages, we include one in each package we send to our little tubies and we appreciate every donation! I’m attaching the link as well as the list, so if you have a tubie of your own and want to buy a book, there are quite a few great options!

Our “Sponsor a Tubie Book” wish list on Amazon carries some FABULOUS tubie books for our young tubies! Click HERE to go straight to the list, the names of our most used books are listed below in case you shop elsewhere 🙂

 

BOOKS!

“The Adventures of Team Super Tubie”

Kristin Meyer

“Tubie Kids Like Me”

Annette Fournier

“When My Brother Got a G-Tube”

Jordan Tarbutton

“My Belly has Two Buttons: A Tubie Story

Meikele Lee

“Emma’s Special Tummy”

Paula

 

My Tubey Series by Rhiannon Merritt-Rubadue (full series on amazon!)

“My Tubey Goes to School:  A My Tubey Book”

Rhiannon Merritt-Rubadue

“There’s More Than One Way to Eat: A my Tubey Book”

Rhiannon Merritt-Rubadue

“My Tubey: A Day in the Life of a Tube Fed Girl”

Rhiannon Merritt-Rubadue

“My Tubey: A Day in the Life of a Tube Fed Boy”

Rhiannon Merritt-Rubadue

The Gift of Normalcy

I had a fabulous childhood; I was loved unconditionally, I was supported by my parents in everything I did, and I never felt alone or scared or underappreciated, I always had everything I needed and 99% of the things I wanted 😉 My parents always encouraged me to try new things and find whatever it is that makes me happy.

I’d always been a small town girl, good student, decent athlete, volunteer, etc.; Well, I wanted to be more than just “normal,” more than just small town, so I thought going away for school or finding a job that could set me up for working outside of my hometown & granting me the (financial) freedom to live a lifestyle that I thought was important to me might be my answer.

Like most kids – at least I hope it is this way for most – I was always told I could do anything, be anything or anyone I wanted to be when I grew up, and I embraced that thought and always dreamt about what I wanted in years to come. At 3rd grade I wanted to be a writer, then a cook. In middle school it was a lawyer, then an FBI agent or a behavioral analyst like those on Criminal Minds, and finally, by college, I wanted to be a behavioral therapist focused on autism.

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Did I mention my gift for style?

After falling ill and having two severe “flare ups,” the second of which never passed, has guided me into a whole new set of goals for my lifestyle. Instead of searching for my door to an extraordinary life full of adventure and expensive brands of clothes or my dream car – red convertible incase you’re wondering – I want to focus on something so simple – I want to find my happy, I want to make the most of my NOW, and that’s not money or material, that’s my people, my dogs, my artwork, my small adventures just driving a mile to see the dam in different seasons or try to see the eagles nesting, the bears someone spotted down the road, or just the ice on the trees or the flooding over the bridges.

I went from planning every part of my future and searching for all things perfect to searching for all things normal.

I want to be able to enjoy all of the small things, I want to be able to say yes every time I’m invited to go out with my sisters, I want to be able to make new friends who I can say yes to when I’m invited out …

Hell, I’m not even asking to be able to eat or drink a coffee or a martini, I just wanna go.

 

Chronic illnesses leave you with so little control, losing your ability to make all of the small, simple decisions that most people don’t have to think twice about can be an incredibly difficult thing to adjust to!

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Part of this adjustment is that severe chronic illnesses require just about 24/7 care, as an adult, so alongside the control, you lose any and all modesty and privacy you had left. For an introvert like myself, that’s no easy feat to come to terms with. I’ve never liked being the center of attention, & being sick is not a super easy situation to deal with when you’re shy, I mean just having people ask me how I am all the time has been tough, it’s a balance of how much to share.

It’s a quick second to think through — who is asking, do I know them? Do they know my story or are they just asking b/c that’s how you greet people? Do they want a real answer or are they being polite?

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I started this blog to help update people on my own health, but also to spread awareness so that people know how to handle situations like this, and I hope it is helpful for other spoonies but also for care takers and loved ones who are looking for help and advice so feel confident in your ability to support your loved one during their journey.

I sometimes get an urge to do something that normal people my age should be doing, and sometimes it might be a push for me, maybe even a risk, but sometimes a girls gotta do what a girls gotta do.

These times are those in which I don’t need questioning, doubt, or guidance. I don’t need it and I don’t want it, I just want support, I want love, I want encouragement. I want you to be happy that I am doing something that will make me happy, and we can deal with the repercussions as we go 😉

So, what’s the greatest gift you can give me? The best way to talk to me, best way to treat me?

Treat me like you would treat anyone else.

I can’t speak for every spoonie/tubie personally, but I know that personally, but learning how quickly things can change, how abruptly you can lose the ability to do your favorite things, eat your favorite foods, go out and take advantage of your youth, or even just care for yourself you often reevaluate your perspective and priorities.

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When you hear my name, I don’t want you to think of “oh that poor sick girl,” or “oh what a shame, she was doing great things.” When you hear my name, I want you to think, Rachel, Rachel is going to do great things, Rachel is fun, Rachel is creative, and Rachel is making a difference for others. Rachel is sick, but Rachel is capable. I’m tube fed, IV saline dependent, and I use a wheelchair, but I am ABLE to be me. I have good days, I have motivation, I have goals, dreams, hope, and feelings. I’m just like you, but I have a whole different, deeper understanding a perspective.

I don’t need to do everything in the biggest, grandest way. I don’t need to make a ton of money or have the biggest group of friends. I don’t feel a need to stick out or be recognized as anything more than just being me. Being Rachel.

Thoughts 6 Years In

I often feel that when I put myself out there and say, “Screw you, Ehlers Danlos Syndrome (EDS), screw you gastroparesis, I WANT to do this, I’m going to do this,” and I actually DO,  my body comes back at me saying, “uh, hey now, who gave you permission to do that?”

When I do this, I try to compare pros and cons, are these things I want to do worth the payback that will come my way? There are so many things I want to do, and I’m an adult so I can do whatever I want, right? No grounding or taking my phone away, but if I misbehave, my body can punish me in a much harsher manner than my parents ever would.

Yes, chronic illnesses are brutal. Yes I am exhausted and utterly uncomfortable, but now, after years and years of searching for answers or simply searching for relief, I have to learn to care for body and mind, not pushing myself to a point of danger or past a “safe” space health wise, but I also have to embrace what I DO have and what I am capable of. I have to hold onto every bit of the true ME without forgetting where I am in my life right now.

I recently had a bit of medical excitement (a bit of a scare) when a new symptom popped up from out of the blue, but I woke up and honestly thought very little of it aside from knowing I need to be mindful today, just watch for symptoms I don’t usually experience or other warning signs!

So why am I becoming numb to symptoms or complications? Because I’ve seen it happen, because I have hope, but not expectations? I know that many don’t understand that, we all have different ways of coping or different perspectives on the meaning or the terminology — “hope” is relative, similar to grief, we all go through this process with different coping mechanisms. I know that EDS can lead to all sort of complications, it sometimes feels like there’s no end to the diagnoses, every year brings another symptom, another doctor, another diagnosis. I’ve watched it happen to girls just like me; heck, I’ve watched my own health continue to “D&D: DETERIORATE & DIVERSIFY,” so I guess you could say I’m not impacted or fearful in the same way that many healthy people would be when something like this occurs.

Does this lack of reaction represent a lack of hope? Have I built up an immunity to “human” emotions? Do I live life expecting the worst? Fearing or expecting to die? No, I don’t. Though I am forced to consider more seriously some of the not so fun parts of life more than most individuals my age, I don’t plan on leaving y’all anytime soon

So, then, is it a coping method? I suppose, probably, it is. While I prepare for all possibilities, there’s a wall there to protect myself and those around me. There’s no way for someone to focus on something of this magnitude 24/7 without going downhill quickly, so it’s important to me not to let that happen. I don’t want to torture myself mentally by focusing on my physical state all day, every day, but more so, I don’t want my family to have to go through that day after day. They have sacrificed and suffered enough throughout my journey- through thick or thin they are always by my side, but if I can spare them any grief or burden, I will do that. No one should suffer from chronic illnesses like these, but if I have to, I at least want to do what I can to protect others from extra suffering.

Chronic illnesses are nasty and powerful, but they don’t always win. I’m not out of power yet, I have a lot of hope left in me, and even more so than that, I have a will to live. I have a heart that craves more love, a soul searching for MORE adventure and experience, and eyes that WILL get to see the world.

My body may protest, but my will to live and my love for life, my love for simplest of things and the most wonderful people (& dogs) will power me through anything. I believe in the power of love, love is stronger than any fears I come across in my journey, and I am not lacking in love.

(I am single, though, just FYI 😉 )

I have a complex, difficult life, but it is filled with so much good that makes all of the challenges and trials, all of the terrible symptoms and times of questioning or doubt seem so small and unimportant. I am surrounded by love and unwavering support not just from my (biological) family, but also from the incredible community that has continuously come together and shown what true family is. My family expands all the time, it crosses oceans and countries, there are no limitations, just love, support, and acceptance. I’m continually amazed by the incredible, valiant efforts that I never could have asked for or dreamed of and I am reminded often of the true values of life, of friendship, of open mindedness and a judgment-free perspective, etc. I am blessed, I am thankful.

I am sick and I have hardships every day, but I have hope, and I have dreams, goals, and motivation – so watch out world, I’m on a mission and it’s not to the doctors office – and probably not to stand up comedy either.

xoxo

Newbie Tubies Round 2

I’m so excited to start year 2 of Newbie Tubie Care Packages (NTCP), after such a successful first year, I can only imagine what 2019 is going to bring. As we begin this year, I want to update you on our progress & how you can continue to help us make this project possible.

We just had a feature in my local paper, and I’m so excited to have had that opportunity! Newbie Tubies isn’t just about packages, it’s about bringing together tubies new and “old,” and to create a space where we can learn from one another and create friendships. Newbie Tubies is also aimed towards the caregivers and loved ones of tubies or spoonies, we want to support everyone as much as we can, in any way we can, for as long as that person is around, tubie or caretaker.

To keep this project up and running I have worked endlessly to find people willing to donate to this cause, or even better, others who are as passionate as I am and are ready to be part of the NEWBIE TUBIE TEAM, and though I got turned down or ignored more times than I can count, I did find a few ladies who are a true part of the team and help whenever they can.

Most of my donors are or were sick themselves or caretakers, and that’s why they make items like tubie pads and thermo-bags for IV fluids, etc. Our donors know the importance of this project, and I am continually amazed at the empathy and support I have gotten from these individuals who I have never “met.”

That said, my 3 tubie donors and 1 heating pad donor, as incredible as they are, they’re also trying to make money from their products, many to pay medical bills. I can’t ask 4 women to donate enough for over 100 packages!

I am always looking for more individuals or groups of people who feel inclined to join Newbie Tubies and the VIP donor program, which means I do everything I can to send people in the direction of the shops who donate to us, and I post on all platforms (FB, IG, blog, twitter, in boxes, etc.) both to thank our donors, but also to “pay it forward” in the way of sending people their way.

If you ‘re interested in being involved but don’t know how to sew or aren’t crafty, I always have tasks I could use help with. We want to include as many people as we can, both on the team behind the scenes, but also for the members of our program/follow our accounts to continue to learn through blog posts and tip lists while also having a chance to interact with others who are also going through this journey.

So, I’m going to share below some of the things we need in order to keep Newbie Tubies as active as I hope to.

 

WAYS AND RESOURCES FOR GETTING INVOLVED:

DONATIONS: what we need and how you can find it

EASY OPTION!

I have multiple lists on amazon, etsy, and simply items you can find at the dollar store or the mini-item aisle at walmart while you’re grocery shopping! I try to make it very easy.

You can also purchase products like art work and vinyl products that I make but put all profits back into the project – every sale helps!!

            We also have guides and lists for what we use and where you can find it! It can be as simple as buying some extra chapstick or germ-x when you’re shopping for yourself.

Amazon link:  http://a.co/4VCstGg
http://a.co/8DNAefV

Link for Sponsoring a book for our “littlest tubies” : http://a.co/1yuuZO2

Etsy link: https://www.etsy.com/people/rsb4fc?ref=hdr

Link for “Tubie Shopping Guide”/ our shopping list: https://positivelyrachel.com/category/newbie-tubies/

Volunteer Survey:

I have so many projects I’d love to do, but I myself am a tubie and a quite sick one at that, but I do all the packing of boxes with the help of two fabulous ladies who come over almost every week to help, and from my Mom, who is also passionate about this subject. When I started the project, I never could have imagined that I would send out over 100 boxes in just a year! Because of how much NTCP grew, and how quickly, I can use help from anyone who feels called or inclined to be involved.

Specifics:   I need some individuals who are blessed with an understanding of technology, something I lack. A few examples:

  1. Etsy! Anyone up for helping me get my page set up? All profits from my sales go towards NTCP, so I would love to sell more, but I’m struggling with the technological aspect of that goal.
  2. Google Drive – I use google for most records and organizational guides/notes/etc. If you know a lot about that, that would be beneficial!
  3. Graphic design and artistic minds
  4. Social media help; posting, advertising, sharing, interacting – I would LOVE for our IG page to be more interactive, people commenting, sharing, getting to know one another, but I don’t do a great job keeping up with it and making it happen
  5. Keeping track of boxes; who got them, who didn’t, how many we do, etc.
  6. Finances and Inventory – track how many packagegs we send out but also what donations we get- money or product, as well as my own sales that go towards it, and the amount I end up spending out of pocket to complete packages

OUTREACH – looking for new donors, sharing posts, and watching for sales we would be interested in.

a. Find other blogs, pages, or articles that relate, we share them or guest post to spread awareness and find new people with their own experiences that we can learn from!

b. Watch for sales, giveaways, and new shops for donating as well as for individuals who may have extra tubes we could use for tubie animals-– often kids who don’t need them and had an extra gtube at home, and it is no longer needed, etc.

Your own PRODUCTS, what do you make? (if anything)- like tubie pads, tubie clips, other medical items, or any other “carepackage” items like bath salts, lotions, soaps, etc., we would love to hear from you!

1.Tubie pads/clips/go bags

  1. Feed Backpacks – converting kids backpacks or adult backpacks to hold tube feeds, pumps, and such.
  2. Tubie Friends: stuffed animals with tubes for little kids – two part project…
  3. Finding the tubes through hospitals, facebook, and contacting the manufacturers and seeing if they would donate any sterile tubes but ones that are either expired or have defects that make them unusable—explain what we are doing and see if they’ll send us tubes- especially button tubes of any kind, but we take anything we can get! (g, gj,j tubes more than NJ/NG.)
  4. Making them! Do you make these or know you can? That could be another upcoming thing based on donations/tubes we can acquire.

 

There are so many ways you can help this project, just sharing it and telling others about it is helpful. We are looking not for more applications – we get countless applications – but for awareness and depth and support from the “normal” world. The goal is to make this terrible thing into something slightly more tolerable through creating resources and opportunities to be yourself and feel what you need to feel, but also to learn and be prepared for all that could come your way ; I work hard to create a resource that gives you so much more than doctors or healthy individuals can.

 

Happy Feeding Tube Awareness Week and thank you for being inclined to read and learn about this fabulous project!

New Years Thinking

Every New Year I like to think, this is my year. I look back on the last year, or really just on my journey in general, and I think of course of my illnesses and my desire to find a cure or a treatment that would lead me to a more “normal” lifestyle, but year after year that doesn’t come. This year, I’m not relying on specialists with new perspectives or treatments that will be approved by insurance, I am instead looking at myself and my situation and thinking how can I work to maximize my experiences and the value of my time? I may never have my cure, and I may not get rid of my medical devices, but I can make the most of the life I have, and now that I’ve been through all the tests and all the procedures and I’ve seen the biggest and the best doctors out there, and here I am, how can I help myself?

I have just as many goals and dreams as I did when I was 16 and healthy, but now they mean even more to me. I want to get back to who I was, who I am, as much as I can. I don’t plan to achieve all of my goals this year, but I think setting myself up with healthy goals and positivity, a hope for a fulfilling life, could be the most effective “treatment” I can have.

I want to be more active, both in a sense of being able to spend more time outside of my home but also being stronger and feeling more fit and less frail. I want to make friends who are here for me regardless of my health and all that comes with that.

I want to fall in love, I want to feel like I am loved and adored no matter what my stomach looks like, no matter what I can or cannot do, no matter what date night looks like. I want to know there is a person out there who doesn’t need to see past all of my greatest insecurities, but is understanding of all I’m working through.

There are so many places I want to go and things I want to do, and I want to be able to do it without limitation, but if I have to work around things, I will. I can’t do a lot of the things on the top of my bucket list right now – swim with dolphins, scuba dive, snorkel in the tropics, etc. – but I can work up to it. If I’m facing a lifetime with health complications, I’ve got to start embracing that and working with it even more than I do now.

It’s not as if I can pick up and go today, I’ve got a few things to try to manage a bit better before I go too crazy, but it’s only January 7th so no one is too far into resolutions, right?

I have to learn to push myself in healthy ways but form a relationship with my body where I am able to feel more control while still continuing to listen to my body. I’m going to start with keeping up with the blog, revamping and working hard on Newbie Tubies, and trying to be more active.

 

Happy New Year 🙂

Delivery Day

Ice ice everywhere! Our first bout of winter weather came to town this week, and it was enough for two snow (ice) days for the kiddos, pretty much the most exciting thing back then. Sadly, I’m no longer an exited 6year old whose biggest worry is whether or not there will be school tomorrow, and though I still love waking up to a winter wonderland, snow days are a lot different for me now.

I live in the woods, and my driveway is a gravel mountain itself, so when the weather is bad, we are often stuck here for as long as the ice is. This ice storm came through on a Wednesday night/Thursday, which of course, with my luck, is the day my medical supplies are sent out (Wednesday) and delivered (Thursday). I rely on all of these supplies to stay alive and out of the hospital. My entire week’s worth of food (tube feeds), hydration (IV saline), and the medications and supplies that are vital for keeping me going are in one, very heavy, box.

My home health/ pharmacy does everything they can to make things run smoothly, but they can’t/won’t send packages early, so during a winter weather storm like this, things can easily get lost or delayed. I received an email from my pharmacy saying the supplies hadn’t gone out on time and weren’t able to be delivered on Thursday, so it became a question of how long would it be until our driveway would be passable, giving us the chance to go and others to come.

That said, it doesn’t necessarily all ride on them, my network goes much further that that, and in ways some may not have ever thought to take time for Before. I received an unknown call on Thursday, and I was surprised when it was my delivery driver from FedEx! He called me to let me know he wasn’t running his route today due to the weather and the road conditions, but he saw my box and knowing how important it is, he called me personally to see if there was any way for him to get it to me. So even though he wasn’t working his normal delivery route, he took time to call and was ready to put forth effort to get that box – filled with those important medications and fluids to me in any way we could. How incredible is that? Just the offer was so genuine and an incredible inspiration, a true member of my team.

I guess I shouldn’t be too surprised, because this isn’t the first time I’ve had interactions with him—always positive ones. This man has always been incredibly kind to me. I’m almost always home alone during the day, he sees me hooked up to my IV pole and a total mess lookin’ straight out of bed, always trying to control my crazy dogs, but no matter what the chaos is, he is always smiling and helpful. You don’t come along delivery drivers who are always ready to do more, to push the job requirements and just be compassionate and accommodating, but anytime he sees an opportunity to be helpful, he is there.

Putting for that effort without being asked to is such an incredible gesture, I know not everyone would do that. I feel incredibly grateful to have such caring and empathetic people in my life, even someone who just knows I’m young and sick and get weekly medical supplies. There’s no limit to who can share and spread love and support, and I couldn’t ask for a better reminder of that. There are so many members of my medical “team,” and you probably don’t automatically consider a delivery driver to be a key member, but in bad weather, lost boxes, damaged product, etc., you better believe that these individuals are key to your treatments, your well-being.

In a time during which I am feeling a bit lost when it comes to doctors and support (aside from my fabulous parents <3), having these individuals who really do care and put forth such effort is an incredible blessing. This week I was reminded of that, reminded to appreciate everyone who puts forth effort into my journey, some of whom don’t even know they are participating while others are doing work behind the scenes that I don’t know about.

I urge you all to think about each member of your team, including all of your (kind/helpful) nurses, the x-ray /IR techs, and your pharmacy or delivery service, home health, etc. Think it through, make a list if you are as forgetful as I am. And then let them know you’re feeling appreciative! Bake cookies or write a thank you card, you never know who might be in need of a little appreciation.

Spread the love, and never underestimate the impact someone can have or how much just one small act of kindness can change the course of someone’s day.