Pig With a Purpose: The True Value of Pocket Change


One of my favorite and earliest childhood memories is how my dad would come home from work every day and empty his pocket change into this big, clear jar on his dresser. Slowly, that jar would fill up &  and when it started to get near empty-ing time (hardly ever did we wait till it was actually FULL), my sisters and I would add in any change from our (sad) little piggy banks and the fun began! 

For awhile we put the coins into wrappers, we learned to sort them, count them, and break them up into equal piles once they were sorted by coin type, it was a fun learning task, a fun thing we did together. After sorting we would all go to the bank and get cash. Later on, though, we found a magical new way to do things…

Suddenly we could pour the change into the AMAZING coin eating machine! This magical being somehow counted our coins and spit out a receipt that dad gave to the bank tellers and in return, they gave us… CASH!! WOOHOO! 

My dad would give each of us girls part of the pot – sometimes it was more, sometimes less. Sometimes more pennies, sometimes more quarters. Either way, we each got some money and that was so exciting. But we would also talk about how some people don’t have as much as we do, some kids don’t ever get $5,$10,$20, they don’t even get new toys or special ice cream treats or in the worst situation we could imagine the kids didn’t even have 3 meals a day or a house with enough rooms for everyone, enough beds, or heat during the winter.

My dad often bought groceries for families in need, spent time at school checking in with the kids who lacked a healthy support system at home, and he was available around the clock, 24/7 for the staff and families that worked/attended the school where he was principal. He is truly a beloved pillar in our community. I was, and still am, always so proud of him and all he does for others; he is a true inspiration. 

So even though we wanted the money for ourselves, we learned how to be empathetic and we experienced first hand that it is a HUGE GIFT to be able to GIVE. I am so thankful to have two parents who instilled this in us just by being them, just by showing  it in their day to day actions and words. They never ask for more, never complain or want, they give all they can and sometimes maybe more than that. 

I can only hope that I will be able to do so much good for others with no underlying goal for approval or recognition, simply b/c we are inspired and driven to do so. 

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If you and/or your children have a piggy bank that is awesome, if you do not have one but would like to start one, I absolutely encourage you to do so. Whether you donate or keep the funds to yourself it is a fabulous way for kids to learn about money, learn about money management or how to spend some save some, or how to be generous and donate!

If you want to donate, I can recommend a fabulous cause 😉

If your child would be interested in helping create a package for a young newbie tubie around their age they can sponsor a Newbie Tubie Care Package!

You can do this through a monetary donation or you can purchase the items to put together a package for a specific tubie based on their age & interests!

We have online wishlists via Etsy & Amazon – book wishlists, button buddy wishlists (purchase an animal for me to create a button buddy – animal with matching feeding tube), tubie essentials on Etsy, and then we have shopping guides to tell you what we include in each package, that way you have a guide to follow as you shop in person or online!

It’s an incredible gift and it means so much to our tubies, young or older, to know someone put these items together specially for them! It’s also a great experience for gift GIVER. Learning early on how great it feels to GIVE is an invaluable lesson that no amount of rolled up pennies, or even quarters, could buy, it is a “live it to learn it lesson.”

We have lots of young children & young adult tubies (mostly ranging from ages 0-36, but also older tubies) so sponsoring NewbieTubies of any age (child or adult) is welcome and SO meaningful, truly SO appreciated! You can make anonymous donations, sponsor anonymously, or you can send a card with your info so that the tubie you sponsored can get in touch if they want to do so!

I will link our wishlists and provide contact info so you can let us know if you have any questions or want to get involved in any way aside from making a donation.

Thanks for reading and share if you can! 

ETSY MUST HAVES: https://www.etsy.com/people/rsb4fc/favorites/newbie-tubies-wish-list?page=3

AMAZON:   

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

BUDDIES : https://www.amazon.com/hz/wishlist/ls/W9IXBH9TFV4A?ref_=wl_share

Sponsor a Book! https://www.amazon.com/hz/wishlist/ls/A2HGIE93P9BL?ref_=wl_share

PAY PAL: positivelyrachel101@gmail.com // VENMO positivelyrachel/positivelyrachel101@gmail.com

Shop Away, Newbie Tubie Style

Below are NewbieTubie Package shopping lists and links to our wishlists for items we are in need of right now! This list is current and we keep our wishlists updated based on supply!

We are so thankful for each and every donation, we truly cannot do this without your support and generosity! We are in need of donor support for products as well as for shipping fees to keep going, so share our posts to help us reach more donors so that our loyal followers and community don’t have to keep funding it 😉

Thank you in advance and please don’t hesitate to reach out with questions or suggestions on fundraising or other possibilities ✨

ETSY: https://www.etsy.com/people/rsb4fc/favorites/newbie-tubies-wish-list?page=3

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

BUDDIES NEEDED: One fun way to get involved is to sponsor a button buddy! All you have to do is pick out a special stuffed animal we can use to create a ButtonBuddy for a special newbie

You can purchase a buddy online & add a note so we know who it is from, can share your name with the newbie (if you’d like), & can send you photos when we create the Button Buddy and send it out! 📬

https://www.amazon.com/hz/wishlist/ls/W9IXBH9TFV4A?ref_=wl_share

Sponsor a Book! https://www.amazon.com/hz/wishlist/ls/A2HGIE93P9BL?ref_=wl_share

Another fantastic donation option is purchasing a tubie-geared children’s book!

Whether they are for little tubies, little ones who have a parent, sibling, or friend with a feeding tube, or for a tubie to share with their classmates, youth groups, sports teams, etc to help normalize the idea of tube feeding and take away any feelings of fear or anxiety for both the tubie and their peers/loved ones, these books can bring so much joy, love, comfort, & self acceptance to a little tubie and their team.

Both toys and books are a way kids learn about the world & normalize, so reading about feeding tubes with young kids can make this incredibly foreign concept, meaning the tubes & the idea of “eating” through the tube on your belly – into something they are aware of, have a basic understanding of, and don’t consider to be icky or scary or weird. It’s just a feeding tube, it’s how some people eat, let’s go play now. How cool is that? Kids are truly incredible in how open they are to learning and how ready they are to accept new ideas, new experiences, how many different ways you can achieve the same goal. We should all be raised with open minds and warm, welcoming arms, we should all live to accept one another and our differences. Life is boring any other way.

PAY PAL: positivelyrachel101@gmail.com // VENMO positivelyrachel/positivelyrachel101@gmail.comi

Of course, monetary donations are always welcome and appreciated We are currently running on fumes fund wise, it keeps us from sending more packages out. So share our pages. Share your own story, that’s what people love to read. If we sent you a package, post about it! Did it make a difference? Share a photo, ask them to support & then share in honor of you✨

ShoppingList: NewbieTubies Supplies (forever changing inventory)

*TUBIE ITEMS- We always need tubie pads **, clips**, tracheostomy pads, and more! Our Etsy list is the place to go!

*BARRIER CREAMS – We need barrier creams (similar to diaper creams!) for our newbies to use – 3x antibacterial ointment and calmoseptine ex.

CHAPSTICK – We are out of chapstick and it is that season again! send us your favorite kind to share with a newbie!

FACE MASKS/Self Pampering- (Skin care masks, not surgical/COVID masks) We love including care items as well as spa/pamering items like face masks & epsom soaks and nail kits to let people do at home pampering post op! A little self care is always comforting & refreshing while recovering or admitted

FACE MASKS – AGAIN? We do love including surgical masks, so if you make cute COVID masks, send them our way!

Baby Bath & More – bath supplies, fun bath paints & crayons, fizzers, foams, etc are always great; also sponges, towels, bubble bath, and bath toys & bath books! We also use baby socks, chewies, musical fun, and all care items.

Onesies – Solid colored onesies – if you have any of these on hand or see them on sale, send them our way!

FUZZY SOCKS – who doesn’t love these? 

MINI GERM X – you can get these for 97C at Walmart as well as at any pharmacy or the dollar store! It is SO important that our recipeints have these while they heal, especially since they are having surgery during COVID19. So when you shop for yourself in person, for pickup, or online, add in a few for Newbie Tubies! Also on Amazon

Mini QTips- right by the mini germ x are mini qtip containers! We love these for every package so send them our way next time you see them! Also on amazon

Thank you to everyone who reads, shares, and donates to our efforts. You areall making a difference for someone who’s is in need of happy mail and love, so you can feel good about that. Sometimes giving feels even better than getting, and I can guarantee that this is one of those times 🙂

Button Buddies

When I got my first feeding tube (oh so long ago), my mom made me a “button buddy” by hand and to this day, that koala, Kevin, goes with me on every long trip to the specialists, every hospital admission, and is always arms reach away when I’m not in my “safe space” or when I’m struggling to feel strong and positive about my situation. For me, my buddy represents the love and support I recieve from my mom and the rest of my family as well as the strength and perserverence I have had since getting my first tube, my first diagnosis even. Kevin has two tubes and a central line now, and he’s been a trooper through it all.

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Kevin, my “tubie friend,” has a central line & tube(s) like mine!

My goal this year is to spread the love and the comfort that my button buddy has brought me with as many of our “newbies” as I can, and that’s all in thanks to our donors who have donated the tubes and stuffed animals or the funds for our animals and the shipping costs it takes us to send out our packages. We’ve had incredible donations from both AMT (Applied Medical Technology, Inc.)and eSutures Medical Supply Sales, both of whom are making it possible for us to send buddies to an incredibly increased amount of tubies this year than any year past ( we are still always looking for low profile tubes) and I just can’t wait to share this with you all….

 

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thank you AMT for the tubie bears!! what an incredible donation, I’m humbled and overjoyed.

When I was a little girl I LOVED my dolls. My first american girl doll looked just like me and I took her everywhere. We wore matching clothes and I even cut my hair to match hers (big mistake). For me, my dolls were so much more than just toys to have fun with, they brought me joy and comfort whereever I was – especially since I was so shy and often needed that “security blanket.” 

It’s not difficult to find dolls with wheelchairs, crutches, glasses, even diabetic kits and dolls who are beautifully bald, but feeding tubes? No. Those are still something that doesn’t even cross most people’s mind’s – and that is why I’m here.

With toys like these kids are able to share about things that may otherwise be difficult for them to communicate or to understand; through play they are able to learn from one another and see all of these new things in a way that is not scary or confusing, just kids being kids – all together, blind to any differences, and every child deserves that, tubie or otherwise. 

Button buddies allow children to be involved in as much of their loved one’s journey as possible in a way that helps them grow and understand the unknowns and the things they may be fearful of in the beginning. For instance, if the buddy goes to a child with a parent who is a tubie, the child can watch while their mom/dad is “eating” or doing fluids or changing the dressing and the child can use the buddy to do these tasks along side their parent! The same is true of siblings of tubies, classmates, and tubies themselves as they learn to care for their tubes and go through procedures, hospital visits, tube replacements, and feeds or medications that they have to do daily.

Buddies have the ability to provide comfort beyond the normal “safety blanket” item that most have and are attached to as children, it becomes another warrior in your battle and another supporter in your journey.

 

The beauty behind playing with these toys is that there is no recognition of the differences in toys, there’s no judgment, no prejudice, simply children playing together, learning as they go, growing, and that in turn becomes them accepting of one another with no qualifications, no recognition of the differences, just as they saw their toys.

When I give a button buddy to one of our little tubies and they see that tube, the light that comes into their eyes is just incredible. Suddenly that toy with a very expensive piece of plastic in its tummy changes how even the “littles” themselves see the feeding tubes! 

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You can so clearly see  that the  button buddy – a stuffed animal –  has the power to change how these children view their tubes from being a medical device that makes them different  into a part of their body that makes them special, that their tubes are not scary or gross or something to be ashamed of. When they fell in love with their Button Buddy tube and all, they have accepted themselves – tube and all.

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If you want to sponsor a Button Buddy you can do so by making a donation of anywhere from $12 (for just the animal) – $30 (for the button & “surgery”) – each bear is valued at $30 and shipping is $8-$15 each.

PayPal & Venmo are both @positivelyrachel.com

You can also purchase an animal and send that to us to use to create a buddy! We have an amazon list or you can pick one out on your own and ship it to us!

Here is our AMAZON Buddy link!

https://www.amazon.com/hz/wishlist/ls/W9IXBH9TFV4A?ref_=wl_share

Xoxo

Rachel

 

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

The Myth of Malnutrition

Lets talk malnutrition. 

Malnutrition is one of the most misunderstood medical concepts; it’s complicated and can present itself in so many different situations and with differentiating signs and symptoms in different people. When you hear malnutrition you probably think of pre-me infants with failure to thrive, kids in africa, or people caught in blizzards on Mt. K, right? The extremes? 

What you don’t usually think of is 16 -30year old females who have previously led healthy, active lives but all of a sudden stop processing food. And then there are the little kids, 3-8 year olds who just cannot absorb nutrition and gain weight and strength like they need to be doing at that age for developement. Can you imagine? Most of these people end up on tube feeds or IV nutrition in order to get nutrition and hydration, in order to stay alive. 

Another myth about malnutrition is that you must be skinny if you’re malnourised. I mean if you can’t eat you lose weight right? No brainer. But no, that’s not how it always works. The body can do one of two things when you are malnourished, it either begins eating away at any extra fat cells you have and then eventually turns to muscle as well, leaving you skinny, weak, and easily dizzy, clumsy, tired, and in pain, OR your metabolism shuts down and you begin packing on ANYTHING possible, any sugars, carbs, liquids, etc. are stored as fat and you begin gaining weight even if you hardly take in 200-1000calories a day.

Being a “gainer” as they say can be extremely difficult both physically and emotionally. You aren’t eating, you aren’t getting to enjoy your favorite foods, yet you’re packing on weight with no explanation. It’s unfair, it’s uncomfortable, and it’s often extremely difficult to turn around, nearly impossible to reverse no matter how hard you try, no matter how much you exercise or how little sugars or carbs you take in. 

People who are not educated on this topic don’t always take people seriously about their nutritional level if they are not underweight. They must be lying if they are gaining right? Wrong. Our bodies are just different, and we may not know exactly why, but it happens, and that’s a fact, not a myth.

 

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.

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

 Sadly, Nicole and I are not the only ones dealing with this. I think you would be amazed at how many chronic illness patients have experienced some form of trauma through the medical system.

I just recently had another experience with a doctor I have been seeing for years and had developed a good relationship with when out of the blue he lied to me and denied me the treatment I have been on, when out of nowhere he decided to put blame on an innocent party and deny me relief. How could someone let someone suffer when he had the ability to help, to help me have some relief from pain? Does that seem helpful or harmful?

Not only has he stolen my pain relief, but he has stolen my faith in him and triggered my anxieties and fears from past trauma and past doubters. Do I not deserve to live to my fullest potential? Why would one human – who took an oath to do no harm, to help patients in any way possible – leave another human suffering, by choice?

If you are a patient who has experienced something like this or any other medical trauma or neglect or malpractice, share your story with me and I will share it on my blog & on my social media pages – let’s bring light to this issue.

For more details just message me!

Thanks to my readers for reading and taking time to be aware. Keep an eye out for more to come✨

Positively Rachel

 

Mindful Impact

Mindfulness. It is just amazing how big of an impact our thoughts can have on our bodies, on our ability to heal. It’s important that you fill your mind with optimistic or positive, healthy thoughts and your life with all of the things that have always brought you joy, all of your hobbies, and the people who put a smile on your face.

Today’s technologies allow for incredible connections; there is a huge online presence of “spoonies” (as we call ourselves) all over instagram and facebook, both individual pages and group pages! This resource is a HUGE gift to those of us who suffer from severe illnesses that leave us homebound or bed bound with little to no social interaction, but there are cons to this as well.

When you surround yourself with individuals who are sick, and you are sick and have been for a long time, it begins to feel normal. You start to forget what it feels like to be healthy, to be a functional, productive person. When you start to feel that way you know it’s time to reevaluate your perspective, remind yourself of what makes you feel like YOU. Not sick you, not healthy you, but YOU.

Be mindful, know your limits physically and mentally. Will all of these posts from other sick chicks –  some of them trending towards competitive over who is worse off, some who seem to thrive off of the attention from being sick – make you focus too much on the sickness? Does life revolve around illness? Because it doesn’t have to; no matter how sick you are, you are more than your illness.

There’s a lot more to mindfulness than this, but it’s a start. I encourage you all to focus not on your illnesses, not on symptoms and treatments and bad doctor visits, not of scary unknowns and dooming diagnoses, but on all of the aspects of your life that were there before illnesses, that exist independently from illness, that bring you simple pleasure, joy, distraction, love. Positivity. Light.

Mermaid Soul

When I close my eyes, I go to the peaceful, beautiful underwater world at the lake. It’s dark and mysterious, the lake floor just deep muck squishing between my toes as I push off to surface like a dolphin, emerging just to take a breath before going back down, being engulfed by the water. You can hear the motor of boats before you see them, it is a soft, rhythmic stutter that comes and goes with the small waves. I could swim like that all day, every day and never be tired of it.

And then I’m in the clear, pure water in the rivers I swam in as a child, always searching for treasures in the slippery rocks under my feet, daring to go a bit farther, a bit deeper, conquering the current, being one with the water. There’s moss beneath my feet, the rocks I hit with my knees, and the little pinchers of crayfish. I find the deepest part and disappear for as long as my lungs will let me, sometimes swimming away and seeing if my family noticed how long I was gone, if they worried at all, other times just sinking into the water and just being one with it, listening, feeling the cold water and the hot sun, washing my problems away, down the river they go, I am at peace.

Chlorine. Salt. Sweat. The pool, the water I spent so much time in, practicing my strokes, competing, loving and hating it at the same time. I always seemed to tire before others, my heart rate was always higher, and even when I took my inhaler, I couldn’t breathe, but still, it was my passion. Summer mornings diving into the cold, cold pool, a shocking wake up call for swim team practice, back and forth, often toe to finger close to the person before me, the person behind me. When swimming for fun, not practicing, I will disappear under the water, swimming without coming up to take a breath, going deeper and deeper, testing out my lungs, happy and at ease.

One day I’m going to be free of central lines and feeding tubes and I’m going back to the water. I’ll live on the lake, I’ll travel and see the incredible beauty of the underwater world through my own eyes, scuba diving, snorkeling, swimming with dolphins, maybe hippos too – just no snakes. ☺ I can’t wait to return to my life as a mermaid, feeling the water, seeing the beauty, feeling no pain, just peace and happiness, such simple things.

These memories are worth gold, they’re what I need to have faith and they inspire me to make my dreams come back to reality. A piece of my soul belongs in the water, the thought of return comforts me when I need an escape, being my happy place when I need to disappear, and gives me hope and drive to find my way through my trials and back to my underwater world.