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

Newbie Tubies turns TWO?!

In November we will hit our 2 year mark, I cannot believe it! We will also have sent out OVER THREE HUNDRED PACKAGES at that time! We have already had over 300 applications sent in and have filled at least 75% of those, how incredible is that? 

Unfortunately right now, Newbie Tubies has no remaining funds for shipping boxes or purchasing the extra items that aren’t donated, so in order to continue as we hope to, we need YOUR help to get there. 

We’ve had some incredibly generous donors who send us tubie pads, heating pads, supply bags, and other tubie products and we have shopping lists for amazon and etsy for easy online shopping as well as shopping guides for inexpensive items from target, walmart, & fabulous dollar store finds, but none of that covers the $14 shipping cost that each box costs, and I simply can’t afford to pay out of pocket for any more boxes.

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There are so many ways we can raise money, but I cannot do it alone! 

ALL of my artwork profits go towards shipping costs, so check out the shopping site as well as my facebook page to see the artwork that is available and supports this project! There are also vinyl bags, shirts, onesies, and decals that are made to support the project as well! I take commission for both paintings and vinyl so email me or message me if you have an order!

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True amazement and joy when the littles get a buddy, this single toy helps them feel confident and less “different” from others.

We hope to do a shirt fundraiser, so keep an eye out for that as well as for an upcoming raffle! Share our page and these posts so we can get as much attention as possible, every tiny bit helps.

If you are a recipient of a package share a post about what Newbie Tubies means to you, how it helped you and why it’s a cause to donate to. Hearing personal testimomy about what we do and why and first hand experience about the impact it makes can go far, so share that on your social media pages, email it to your doctors or family members and have them share it – let’s MAKE THIS HAPPEN TOGETHER! 

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My first package sent! Now I’ve sent over 20!
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A newbie tube with her matching, tube fed hedgehog!

I hate asking for monetary donations, but right now, I have to do so if I want to send out any more packages. If you have fundraising ideas or are interested in helping out in any way, I’m all ears. 

Thank you so much for reading, sharing, and helping in any way you can. We truly appreciate every one of you and you are making a difference for so many.

 

 

Information for donating and contact information:

Amazon wishlist: https://www.amazon.com/hz/wishlist/ls/1J7LHVRD4V3A6?ref_=wl_share

Paypal: rajinone@aol.com

Facebook: Newbie Tubie Care Packages // Positively Rachel

IG: newbietubies // positivelyrachels_art

Email: positivelyrachel101@gmail.com

 

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

 

When Life Gives You Limes

People often use the expression, “when life gives you lemons” when things aren’t going quite right, you’re likely familiar with the phrase? Well, humor me as I explain why I’d like to adapt the statement to, “when life gives you limes.”

In my opinion, lemons are tasty and you can do so much with them, many options being super simple! For example, of course you can make lemonade, then there is lemon cake, lemon bread, lemon cookies, pie, and more! I mean lemons are great for tea, detoxing, or simply put in your water. Lemons are just so handy, but limes? Limes are a little bit more complicated, they’re slightly more sour and although you can use them in drinks and recipes, it’s not quite as common, kind of like chronic illnesses – complex and uncommon.

That said, I have quite a few limes in my life. I’ve been diagnosed with over 10 chronic illnesses, a handful of which are seriously debilitating and progressive. I’ve had to take medical leave from the school of my dreams, now having watched my classmates graduate without me, and put my future goals on hold. Because of my symptoms– mostly nausea, pain, and fatigue– most days I am not even able to leave home and I spend majority of my time in my bed resting and sleeping.

I have new limes thrown at me every time a doctor gives me a new diagnosis, every time a treatment doesn’t work, and every time I wake up feeling worse than I did the day before. However, I’ve learned to take these limes and use them to help me find all of the gifts in life, all of the things that I am so thankful for. When you’re given challenges, sour moments, it really teaches you to be so much more thankful for every little moment or object that makes you feel joy.

Some of the sweet things in my life that regularly help me get through the sour moments include my dogs, Baxter & Dexter, my family, good music, and my online support network. There are also little gifts day to day like a 75 degree day, a special visitor or getting something in the mail, being able to take a walk, an Epsom salt bath, taking a drive and seeing pretty scenery, etc. Lots of small things bring me joy, and I am so appreciative of every happy moment I am given.

I’ve had a lot of curveball limes recently, broken tubes, line infections, flare ups of pain and nausea, exhaustion, and doctor troubles to name a few, but I’ve learned to put up walls that keep all of this from affecting me too much, only allowing through the smallest amounts of stress or worry possible – the last thing I need on top of my illness happenings? Extra limes.

Learning to filter out some of the extra stressors, even the smallest things you may hardly notice can make a big difference in the long run. Hold on to every happy moment, every simple pleasure, and let go of negative energy; hold no grudges, and never go to bed or leave your loved ones angry. Forgive, love, laugh, and remember not to waste precious time on trivial issues. When life gives you limes, take a moment to find your own sweet moments and happy thoughts, play your favorite song or cuddle with your dog, text your best friend or your mom, take time to express yourself, share your love and gratitude, spread the joy in random acts of kindness, random words of affection. Life is too short to be sour.

 

Adventures of Mummy & Her Little Tubie

I’m excited to share a post written by one of our Newbie Tubie Mamas who is the mama of a little tubie and agreed to share a bit of her journey with us! This is a great opportunity to read a bit about raising a tubie from the perspective of the mother…

“There were times I’d sit and wonder how the hell we were going to get through this, how can we live like this forever not being able to feed our baby who’s starving and also failing to thrive anyway so needs every bit of milk he can get.

Our little man is now 8 months and has all of his nutrition via a feeding tube. Some days your baby’s screaming for milk and you can’t feed him because you can’t get the right aspirate – this could take us hours. It does get easier I promise!

I’m very lucky my husband is amazing with our children. He’s definitely the more practical thinker and I go into full research mode and sit and think what if. I have managed to tone down the googling – my husband made me promise I’d only google it if the doctor had spoken about it or it was in one of his reports and that really does help. Your then looking at specific information rather than a whole load of case stories of children who have completely different medical histories. I do find that being prepared helps my mental health, but only if I’m preparing for the real thing, not something from google that ends up being way far off from what’s really going on.

It also helps that he’s a very hands on Dad so I know when I’m in hospital with our youngest that the others are safe and happy at home with their Dad who also manages to keep the house going while I’m away. They spend lots of time visiting us because at the moment they’d rather be with us at the hospital but when the time comes that they don’t want to do that anymore we will be respectful of this and put other plans in place.

Our children have been amazing, they find it really tough and it’s so important to remember that this isn’t easy on them, either. They’re young, but they see the complexity, they see when we are upset, they want to know, so we tell them what’s happening but also try and keep their lives as normal as you can. We try and make sure they get to all their clubs, they have friends for tea or we get them on days out as we would have done before.

Siblings are a great gift to our tubie, but we have to make sure that each child feels loved, appreciated, and individually important to us and to everyone. Each one makes a huge difference, is an inspiration, a source of strength and light and joy.

During feeds it can be difficult to pick your baby up without messing up the pump, kinking the tubing, or making your baby uncomfortable from the feeds, and as caretakers, moms especially, all you want to do is hold that sweet baby! There are often extra steps when doing these basic, instinctual habits, and when you’re a parents, that can be extremely frustrating and disheartening. Eventually, the medical supplies falling out of all of your closets and the tasks that come with tubes and chronic illnesses become part of your daily routines, it all just becomes second nature – scary thought, right?

It’s all about finding the right mindset, but you first have to almost grieve the life you thought you were going to have with your new baby. I cried for hours that I would loose that bond by holding him to feed him; I can assure you I was worrying over nothing our bond is stronger than ever! We still get plenty of cuddle time and when he’s feeding I’ll often sit next to his cot and hold his hand, play peekaboo or tickle him. There are lots of opportunities for bonding you just have to look for them.

I woke up one day and realized this was our life and we’ve got two choices we get on with it, build our little man up and hope one day he stops aspirating or we sit and sulk about it which gets you absolutely nowhere! Life doesn’t stop for a feeding tube, feeding tubes allow life to get going again, it allows children to BE children, it is just another way to feed your little one.”

-Hayley Smith

If you have any interest in guest posting, I’m always happy to share different perspectives and pieces from fellow writers 🙂 Email me/contact me through the blog if you want to talk about it 🙂

 

The Rarest of Guest Bloggers: SMA Syndrome

My name is Danielle and I am 26 years old. Growing up I suffered with ongoing stomach issues and doctors just couldn’t seem to figure out a cause. These symptoms would come and go in waves and there were even periods of time where I would begin thinking I was doing okay! Sadly, those times were short lived and when my senior year of college came about, things took a turn for the worst.

In 2015, I became very ill. It began with my endometriosis creeping back in and that was followed with my gallbladder needing to be removed, and despite those things, I continued to progressively get worse – especially stomach wise. I was having severe abdominal pain when I ate, nausea, vomiting, early satiety (I would take a few bites of food and feel overly full instantly), bloating and weight loss. I was only 105 lbs to begin with so I didn’t have any weight to lose so things became critical rather quickly.

In February of 2016 I was hospitalized because at this point I was not able to keep anything down, not even water. I had dropped to 90 lbs rather quickly and we were very scared. My doctor had run so many tests but could not figure out what was wrong with me, until he happened to be in the right place at the right time. He was at clinic where he overheard a nurse, who isn’t typically at that clinic, talking about another girl who had just been diagnosed with this rare condition. He immediately thought it sounded very similar to me so as soon as he was done at clinic, he came directly to the hospital and went to the radiologist. He told the radiologist to relook at one of my CT scans but from a different angle.

They immediately saw the problem and he came up to my room where he finally looked at me and said “I figured out what is wrong with you. You have SMA Syndrome,” otherwise known as Superior Mesenteric Artery Syndrome.

This condition, SMAS, I’ve never heard of it, I don’t know what is hitting me and how it is going to change things, what my life will look like now, all I know is it is rare, and though it has terrible symptoms, it can be very hard to detect. I had numerous CT scans but until they specifically looked for the compression itself, they were missing it on my scans for the longest time even though it was right there. The compression can be seen on CT scans, angiograms and upper GI studies with barium.

SMAS is an extremely rare and potentially life threatening stomach condition in which the third portion of your small intestine (duodenum) becomes compressed between your abdominal aorta and Superior Mesenteric Artery.

In other words, part of your small intestine becomes crushed and food is not able to pass through, creating a blockage.

This can lead to severe malnutrition, sometimes resulting in death. The mortality rate for SMA Syndrome is so high (1 in 3) because it is so rare and often times there is a delay in diagnosis. As you can see from my story, I was extremely lucky that he found it when he did or otherwise I might not have been here typing this today.

So how is SMAS treated? There is no cure.

There are also 2 types of this condition. One being acute onset, caused by extreme/sudden weight loss often following something like scoliosis surgery. The other being chronic, meaning it develops over the course of their lifetime. Surgery can be done to relieve the compression, or sometimes gaining weight (usually via feeding tubes) can also relieve the compression and allow food to start passing through again. However the damage done before it is found cannot be reversed and often times the symptoms can still remain even after surgery or weight gain, which is why there is technically no cure. In acute cases, the prognosis is better and oftentimes weight gain is enough to correct it and relieve the symptoms.

Chronic cases are a bit different, these cases are where the symptoms can still remain even after medical intervention, they aren’t easily treatable and there is absolutely no cure. That was the case for me. As soon as I was diagnosed I was immediately put on TPN (total parenteral nutrition) to help get me stable enough and I had surgery within 3 weeks. Since then, I have continued to have an avalanche of problems and my symptoms have remained. I continue to have pain with eating, nausea, vomiting, bloating and severe motility issues. The damage done to my body from SMA Syndrome has caused the entire rest of my GI tract to slow down and not function properly, so I have developed other chronic motility issues from it as well (such as Gastroparesis and intestinal dysmotility), which sadly is often the case for many people diagnosed with SMAS.

After numerous attempts to try and get things under control, I had to get a feeding tube placed in my abdomen to help give me the vital nutrition I need to sustain myself. I had a surgical GJ tube placed a year ago. I also am currently on TPN through a central line (port) in my chest due to the severity of my motility issues at the moment and not being able to tolerate my tube feeds right now. So often times feedings tubes are needed even after surgery to help manage the symptoms that remain and to help sustain individuals with SMA Syndrome.

Getting a feeding tube can be very overwhelming. It isn’t easy to process what it is like to have a tube surgically implanted into your body and it is a huge adjustment.

But what made the transition easier for me when I had my surgery was Newbie Tubies. I came across Newbie Tubies on instagram (@newbietubies) and saw that they create packages for people who are getting feeding tubes that are filled with all sorts of awesome things to help someone recover from the procedure and different items for the new tube as well.

The goal is to make the transition easier for someone by sending them a package to brighten their day. You can apply yourself or you can nominate someone to receive a package.

 

When I recieved my package it had things such as a blanket, water bottle, socks, handmade heating pad, tubie pads to decorate and protect the tube, bath bombs and a coloring book. It also included a list of tips for living with a feeding tube for those who are getting their first tube. Also, everything was donut and dog themed to fit my personality, which can be noted on the application to make each package more personalized to the recipient.

I cannot express how much receiving that package meant to me when I returned home from the hospital and how much it lifted my spirits. Newbie Tubies is truly amazing and it is creating an awesome community of fellow “tubies” on social media. It is awesome to be able to connect to others who have feeding tubes as well because you can relate to them and also share tips and tricks with each other to help make living with a feeding tube more manageable.

So if you have a feeding tube, are getting one or know someone with one please go check out Newbie Tubies on instagram. Or even if you just want to help, you can donate money or items to go in the packages sent out. So please check it out!
I share my story and my experiences with SMAS with hope that it will help someone else find their diagnosis and know they aren’t alone in this journey. It can be incredibly hard finding any answers, and I know that if it weren’t for individuals working to spread awareness through social medias and the stories others have shared, I wouldn’t have been diagnosed, I would have continued suffering without answers for much longer.

SMAS is an extremely rare condition, and because of how rare it is it is and due to overlaps with symptoms of many other stomach conditions, it often isn’t thought of. Not a lot of doctors know much about this rare disease, most of the time they have only read about it in textbooks during medical school, but each patient, each case, is unique and complex, not one fitting the case studies or textbooks perfectly.

I had no idea what it was until I was diagnosed, so I hope that reading my story can help someone else out there and just educate more people about this condition. For more information about SMA Syndrome, you can go to https://rarediseases.info.nih.gov/diseases/7712/superior-mesenteric-artery-syndrome.

 

Post by Dani Fantaskey — guest blogger and newbie tubie package recipient


 

Thank you Dani!! Your post is fabulous and I am SO glad your package made such an impact on you – seeing your positive remarks truly inspires me to keep working hard to individualize each package. I love doing it, so I’m glad it doesn’t go unnoticed 🙂 So happy to have you, keep in touch and I’d love to have you back involved with the project anytime! Lots of love!

If anyone has questions or comments for her, comment below or contact me and I will get you in touch with her 🙂

xoxo

Rachel

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!

To Those Who Hold My Quality of Life in Their Hands

To Whom it May Concern,

My name is Rachel, I’m 22 years old and live in Virginia. I have an incredible family and two dogs who are the light of my life, and I’m currently living at home on a “break” from college. I’m a recently self discovered artist, I love painting and photography, and I also have a blog. I love working out and swimming both competitively and for fun, my favorite places being Smith Mountain Lake or swimming holes in the rivers, I was born to swim 🙂 I also love driving the back roads with my music and the wind in my hair, I’ve always wanted a convertible. I plan to have a beautiful wedding dress; in fact, if there’s no husband by 35years old, I plan to go try on dresses and wear one because I CAN. I want to travel. I want to live.

I’m Rachel, I’m 22 years old, and I’m a chronic pain patient.

I’ve been sick for six + years, and I have a myriad of chronic illnesses that leave me feeding tube and central line dependent for all “food” and fluids, and with severe nausea and crippling pain every day. There are many days when I struggle just to leave my bed and walk around the small upstairs floor of my home. I sometimes go weeks without leaving the house aside from appointments or my mom driving me to see a sunset or flood or snowy site. I’m often unable to paint or work on my blog due to the pain in my hands and arms becoming overwhelming… I often can’t look at my phone or computer due to my sensory overload and my migraines.

As much as we chronic illness patients love to say that “our illnesses don’t define” us, in reality, symptoms like severe, crippling pain can leave you unable to move, unable to walk, unable to accomplish the simplest of tasks, including self-care/hygiene without the help of a loved one or a caretaker. It causes “painsomnia” aka insomnia caused by severe pain, which in and of itself can be debilitating. The pure exhaustion from being in such high levels of pain can also take over your whole self, body and mind, it can be a scary time if you aren’t able to get relief even just for a couple of hours a day.

I often tell people that I feel like this is a life sentence for the innocent. I feel like sleeping beauty, stuck in her tower waiting for her prince, but I’m stuck in my room and there’s no end in site. I’m the sick girl in the middle of nowhere, but I’m lucky to have parents who work so hard for me.

this is a life sentence for the innocent

Do you have children? Grandchildren? Siblings? Can you imagine watching one of them have a quick yet long term deterioration of their health, and left with daily struggles and little to no relief? Because you’re not doctors or pharmacists so I have trouble understanding why you get to determine who gets these meds and how much we can have….If you aren’t a doctor and you aren’t a patient or someone who has experienced this first hand, what gives you the right?

Last month my pain management doctor and I decided to change my pain management plan after 6 months of consistency, in part to my body’s ability to build up tolerances to medications with lightning speed and in part to the new restrictions on pain medications. With my high, high tolerances and severe, daily chronic pain, it can be extremely difficult to treat, and sadly, it’s about to get harder. Due to the acts of those who abuse drugs, most of whom are not even chronic pain patients, this battle to manage chronic pain and improve quality of life is becoming nearly impossible for those of us on this side of the crisis – those of us who use our medications as prescribed and take them only to help us function on the bad days.

It shouldn’t be so hard to get medications that can improve your quality of life, I struggle so much with that thought, why would they take away these medications when they can help us make life livable?

I hope that the government and the insurance agencies will one day realize how ridiculous this all is, and that they’re stealing whatever potential that I or any other chronic illness patients like me have for relief and a more “normal” lifestyle, taking away the ability to pursue my dreams and my goals without the fear of my pain becoming too much. In this process they’re also taking a doctor’s ability to do their job to the fullest extent right out from under them as they are no longer able to treat patients to the fullest extent or in the way that is best fit for that patient.

There are so many things I want to do in my life. Like any 22 year old, I have goals and dreams and desires, but I also live a life most people my age don’t even know exists, a lifestyle that most can’t even phantom. Sometimes I can’t even imagine what I would do with myself if I were to make it back to society, but I know I’d quickly pick it back up and value every day, every moment, more than any healthy person could.

More on the restriction/ a great article https://www.statnews.com/2018/03/06/cms-rule-limits-opioid-prescriptions/

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 🙂