Willfully Determined

Yesterday I pushed myself to do more and to do different. I decided to be a 22 year old for a few hours, I just ignored the fatigue, took the pain meds, and went to back to back movies (7-11:30pm) with my sister, who didn’t think I could stay out late anymore. It was a gift to both of us to be able to spend that time together, just enjoying doing something that was so out of the norm.

Usually I sleep through 60-80% of movies anywhere we watch them, our basement, my room, the movie theater, other peoples houses… But last night I worked hard to stay awake, and I did a stellar job. My POTS/dysautonomia leaves my body unable to pump blood to my brain when I sit down for too long, so I fall asleep or pass out even if I’m loving a movie or having a great conversation with someone; but usually, if I move around or take a walk I start to feel much more human again and stay awake for at least 10-20 minutes 😉

My family asked me if I really had energy for this, and here is what I told them,

“No, I don’t have the energy, but this isn’t about energy.  This is about desire and determination.”

Sometimes I have to accept my symptoms, accept my situation, and make a choice to push past all of the exhaustion, pain, nausea, and sensitivities so that I can remind myself and those around me that I’m still me, and that there are still things out there, outside of my “safe zone” (aka my house and my room). Watching the world go on without you can be a very strange feeling, it’s like watching from an outside view, looking down on the life I thought would be mine and watching others continue on without me. The world doesn’t wait for anyone.

Recently I’ve been hearing a lot of “nothings” from doctors; some literally don’t have anything to say, don’t answer emails or calls or anything, others telling me they can’t take on my case or I’ve exhausted the options they can offer. It’s a lot of “keep you comfortable” and “manage symptoms.”

After so much of the same, I’m so tired of doctors and meds and tests or treatments that no one actually thinks will work. I want to live. I want to experience my youth, I want to really feel alive and I want to cross items off of my bucket list.

I want to travel and see incredible sites and take countless photos. I hope to visit all of the girls who I’ve met online, the ones who have helped me through these years of illness, and I want to meet new people, and fall in love. I want to get rid of these tubes so I can swim with dolphins and scuba dive, get as close to my mermaid dream as possible.

I have a lot of goals, and I may never accomplish all of them, but they make for some happy thinking & I never pass that up. 🙂

 

Newbie Tubies: How to Sponsor A Package

Time for a Newbie Tubie Update! I am so excited to share that Newbie Tubies has had a huge increase in the number of applications we have received for packages. This is fabulous news, I couldn’t be happier to have this project be so successful and to be able to help so many new tubies adjust to life with feeding tubes.

In all honesty, this huge increase in apps is also a bit overwhelming for me, as a tubie myself, being the one who goes through each application and has to approve or deny each applicant, each fellow tubie… it’s not an easy task! But when I finally get to begin picking out items and pack each package, specialized for each unique, first time tubie, I’m reminded of why this is important work, why I started this project in the first place.

Being able to do this is such a gift, it’s a gift for the tubies who receive the packages, but it also a gift to me and to anyone else who has the chance to experience what it is like to help others go through this strange and misunderstood transition.

Many people have offered support in a multitude of ways, but to share this incredible gift with more people, both tubies & “normal” /healthy people, or donors, I’ve decided to begin offering the opportunity to sponsor a tubie package. I will always take “blind” donations, but if you are interested in knowing where your money is going, or if you want to do the shopping yourself, I am so happy to share this experience with you.

I have applications for new tubies of both genders that range from ages 0-30years and sometimes older.If you’re interested in sponsoring someone close in age to you or your child, I can almost definitely find you an application that fits the bill. I will not be providing any personal information about the tubie, but I will provide a list of that individual’s interests as well as the “Tubie Shopping List” to help guide you in your shopping; you can also add in anything else that would fit in the package and make sense for your tubies age/gender.  After you shop, I would add in the tube items that you likely wouldn’t be able to get on your own as well as our tip lists, donor lists, and Newbie Tubie info before shipping it off.

This process is very similar to the angel tree or shoe box gifts you often see around Christmas time, but this is year round and a bit more specific. There will always be tubies in need of support; sadly, the medical system doesn’t always do a great job at preparing children, parents, young adults, etc. about the transition period to tube feeding or what it means long term. A lot can go unsaid which leaves a lot of room for confusion and unnecessary panic.

**With a donation of $25 or more, you are paying for shipping ($14) and helping pay for some of the extra items in the packages. $30-$45 would sponsor the whole package, all supplies and shipping.

***If you donate $25 or more, you can sponsor a package AND get a painting of your choice from the selection in this album, all of which are originals made by me, Positively Rachel’s Art.***

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I do, of course, accept monetary donations, as well; monetary donations play a vital role in covering shipping costs– each package costs $13 just to ship! So, whether it be $5 to help me buy a few new mini hand sanitizers or $50 to cover package & shipping (maybe more!), you’re helping make this project happen. For that, I am thankful, and you should feel good for helping others during a hard transitional period in their lives that (most of) you can be glad you won’t ever have to deal with. (knock on wood)

My artwork is where majority of Newbie Tubie funds come from; I sell abstract, acrylic paintings and notecards with prints of my art/photography as well as bags, onesies, shirts, and more with vinyl prints to spread awareness & raise funds! You can order my art through the blog or through private messaging (instagram, facebook, email), and I do take custom orders as well; all of my profits from the art sales go towards what supplies are not donated & shipping costs for Newbie Tubies.

The easiest way to donate or pay for paintings is through paypal (rajinone@aol.com), but I do take cash and checks as well.

This is a stellar opportunity to do something really meaningful, to pay it forward.

Help me by sharing this, if you’re a tubie/spoonie or if you’ve received one of my packages, share how the packages helped you, share a bit about the challenges or what you’ve learned in your journey.

Thank you for reading, donating/purchasing, and for supporting both the Newbie Tubie packages and my art.

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instagram: newbietubies (or) positivelyrachels_art
positivelyrachel.com


Facebook Art Sale/Sponsorship:

https://www.facebook.com/media/set/…

How and What to Donate!

 

I have created a list of some of the possible donations we could use, however there are endless options and each package is different depending on age, gender, and interests of each person!

 

Right now (Jan 17) I have an 18 year old male, a 31 year old mom with two kids under age 4, and three girls between ages 16-19 who like either blue or pink, horses or dogs, and glitter or bows.

There’s lots of differentiation, but they appreciate anything I can send them that is comfortable, tube related, age-appropriate, or simple things that relate to their interests.

 

Newbie Tubie Packages

Donations needed–

Care package items:
(Get on amazon, dollar store, Walmart/target,etc)

-Bath bombs, bath salts, natural soaps
-Self care/pampering goodies (face masks, nice body wash or lotion, dry shampoo, etc.)
-Cute hair ties, clips, headbands
-Mini lotions, germ x

-Soft blankets, socks, stuffed animals
-Coloring book/pens/colored pencils
-Small toys and goodies for kids

-Makeup sized bags (fit in purse/backpack)
-Inspirational quote books/journals
-Goal books, guided journals

Medical/health related:
(Walmart, drugstore, amazon)

-Heating pads (rice/microwave), heating stuffed animals
-pill crusher, pill splitter

Tube supplies:
(Found on Etsy, online)

-Tube clips (for long tubes)
-Cute medical masks
-Heating pads
-Tube belts
-Tubie pads

-For home made tubie friends–Unused button tubes, extensions, long tubes
-Stuffed animals

Anything else that will fit in a care package or help make a tubie feel more comfortable post-surgery/during their transition to tube feeding!

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I also accept re-gifting! If Christmas brought too many fuzzy socks and coloring books or one too many scented candle and bottle of the same old lotion, I’m happy to take anything off of your hands that you just wont use!

Spring cleaning brings about lots of unwanted (and unused) items? Donating to my project is just at meaningful as donating elsewhere! Keep it in mind for your extra, package sized goodies.

 

You also always have the option of purchasing a painting! All profits go towards shipping and shopping costs for newbie tubies!

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If you are interested in making a monetary donation, my pay pal account is: rajinone@aol.com

You can contact me at positivelyrachel101@gmail.com  if you have any questions, want to mail or drop something off, etc.
For more information about ways to help with the project or just about how it came about, please check out the blog titled “The Start of Newbie Tubies” 🙂

 

Thank you!