Embrace It

Illness is not easy in any way, or for anyone. When your life is suddenly pulled out from under with little to no warning, and by something that no one, yourself included, has ever heard of nor can anyone begin to understand, boy does life change.

I got sick in high school, and thanks to some ignorant doctors, my parents were pretty sure I was going to be better in no time. I was a young female so of course the daily, crippling headaches were hormones and all the pains in my joints, nerves and ribs were simply growing pains, because as my lovely doctor said, “it’s normal for young women to be in pain.” Right. Helpful

Well when I got to 2 months of being unable to keep down most foods and was on homebound because I could hardly stand up from bed or be on my feet too long without passing out, nor could I eat or stay awake during school… I finally got admitted and got my diagnosis. Gastroparesis. What the heck is that, right? I don’t even think my doctors knew, because no one told me that it would change my life , forever.

I’ve come across so many medical professionals who have no idea what I’m talking about when I tell them about my health conditions…. EDS, POTS/Dysautonomia, Dysmotility/ GP, SIBO, migraines…. Is it so hard? Well maybe, but it shouldn’t be for doctors.

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My family was and continues to be incredible and supportive in every way they can – even if I don’t always want comfort or support for myself. My mom grew up in a family where the flu wasn’t a real risk, a fever was just to keep you flushed and warm, and complaining wasn’t an option. What’s a doctor, right? As long as you could walk and your eyes looked strong, you were good to go – dress nice to feel nice.

To the point, my mom quickly adapted and came through for me and after some rough times in the earlier years, we grew closer than ever as she became my home nurse doing anything from making and hanging my feeds and fluids, sorting my weekly meds, helping me shower when I can’t do it on my own, brushing my hair even though I’m terrible about it because it hurts… I don’t know what I’d do without Nurse Bibi.

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My dad and I have a different relationship, but it is so important to me, even if I have trouble showing it sometimes. He’s here for me no matter what, any time, any day. We go to out of town appointments and listen to fun music, joke around, etc. He helps me relax before appointments when he knows I’m anxious. He also lets me sleep or supports me when I want to do something else.

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That reminds me so much of my year round, travel swimming days when Dad and I would drive to the meets just the two of us because I was so shy and didn’t have friends on the team, but I got dad to myself and we had so much fun. Dad also taught me how to drive 🙂

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My little sister, Laura, has been majorly affected by this situation. She was looking forward to be the only one left at home while I was at school, but here I am. She graduated high school and is now in college. Pretty soon she will be ahead of me. Shes beautiful and gets more attention from boys than I ever did, even before I became the lost girl in the woods! But Laura harbors a lot more feelings and trials than she lets out. I’d do anything to take that back, but I don’t have many options. I’m sorry to put you through that, Laura. I wouldn’t wish any of this on anyone.

Mom and Dad have different love languages, and so do I, but I have to remember how much my family does for me, and I have to put aside any pet peeves that I can in order to truly show my appreciation and love. I’m not great with words right now, I don’t love physical touch, but I do well with actions and giving gifts or sending/writing out my feelings. That, however, is the opposite from others in my family. Dad loves physical touch/hugging, mom loves actions, Laura… probably actions that follow words. Don’t lie. Don’t make anything up. Don’t take credit for something you didn’t do and don’t deny something you did do. Make sense?

Life is short, right? So  embrace every day, and then really embrace the people you love. Can you make a sacrifice or step out of you comfort zone for a 15 second hug? Or a dollar store gift? It’s the thought and the effort that count, most of the time 😉 Family, by blood or by love and loyalty, are the ones you end up needing. It’s never too late to start appreciating people more and treating them as such.

Chronic illness can affect more than just the patient, when you have caretakers and live at home with family members, parents, or your spouse, they all suffer and worry and work so hard throughout the journey. So when you think about the patient and regularly check in or want to be of help, I can tell you that the caretakers (For me, my parents and my little sister) need just as much TLC as I do. It’s also so important for me, the patient, to take time to appreciate each of those people in my life, make sacrifices for them as they do for me, and treat them in the best way I can, even when I’m feeling terrible. This isn’t a battle anyone should fight alone.

 

Love and be loved, go out of your way to support and care for those in need, it’s the best thing you can do for yourself as well as for others.

 

Chronic Illness Tips for the Hard Days

 

Sometimes physically difficult days can also lead to mentally and emotionally challenging days, and if you’re alone or unable to distract yourself, these days of discouragement can turn into weeks of depression, so I want to share some tips on what to do on the difficult days — this applies to spoonies, tubies, mental health patients, and really anyone in general– everyone has bad days!

  1. Get up and change your clothes – This is one I’m often guilty of during my homebound/bedbound times, so I know it can be one of the small hassles we often put off when we are having a bad day or an unmotivated day due to pain, nausea, fatigue, whatever it is for you that day. That said, sometimes just putting on a new pair of PJs, a super comfortable t-shirt dress, or sweatpants, whatever it is that you’re comfortable in, can make you feel a bit fresher and lighter, ready to take on the rest of the day (in bed) 😉
  2. Self care – simple at home or out and about, face masks, nails, Epsom foot soaks, whatever your favorite thing is—
    1. showers optional if you don’t have the energy – one day doesn’t kill ya. (neither does 2 days….3 days? 😉 ) I’m no shower person w/ POTS and GP, but the body adjusts amazingly when your body is adapting to changes like these. Buy some great shampoo and then dry shampoo & leave-in products and you can easily get away with washing your hair once or twice a week. It takes a bit of time, but your hair starts adjusting and working to stay clean longer.
    2. Some people love doing their makeup, even if it’s just for themselves at home! If it makes you feel good about yourself or makes you feel more like yourself, do it! Lay in bed with that red lip stain, work it girl.
  3. Even taking a walk or doing some stretching can refuel both mentally and physically – laying in bed all day/all winter can cause more pain…. Easier said than done, but finding your favorite way to get up and moving — walking, dancing, yoga, biking, etc. — can be great for you in so many ways.
  4. Call up a friend—just have a movie night or go get your nails done, doesn’t have to be crazy night out, just some fun, time to enjoy yourself and for a moment, maybe, forget how crappy you feel.
  5. Dogs are top notch medication/therapy and the most reliable members of our support systems 😉 Find a dog, get a dog, rescue a dog, steal a dog, borrow one… they’re everywhere, and they need love as much as you do!
  6. Listen to music or get out your favorite coloring book or paints and use that creative brain in there! Sometimes all you need is a little bit of a distraction, a different focus for your brain, even if it’s just for 15-20 minutes!
  7. Take a drive. Cant walk? Take a drive with your family/friends/caretaker and just get some fresh air, get out of your house for a little while. See the outside world.
  8. Do YOU. What makes you happy? When do you feel your best physically and/or emotionally? Whatever that is, do it. Drop what you’re doing, take any meds you need to / can so you are comfortable (ish) and follow your spirit, your heart—your body may hate it, but sometimes an outing or a self care distraction can do you wonders.

 

Follow your heart, listen to mind and body, and don’t be afraid to express your emotions. If you can, talk to your parents, siblings, significant other, or friends/loved ones. You can also find so much support through online support networks, one huge gift that technology has shared with us; friendships with others with your conditions can be incredible, its a feeling of life long friendship with someone you’ve spoken to online for a few months and then in the years to come, through your worst flare ups and your toughest, lowest times you are being supported by someone you’ve never met in person, but someone who becomes the person.

Find your happy. Find your happy in activity, find it in hobbies and in friends or animals, in art or cooking, in working or advocating, but most importantly, find your own happiness that comes from within your own self. Love yourself, care for yourself, and don’t doubt your strength. When you need to be reminded of your worth or your strength or your beauty (inside and out), remember this, remember that you are your harshest critic, but you are strong enough to push through anything if you are strong enough to live with chronic illnesses. There’s nothing harder than this, so stay confident and have faith in yourself, care for yourself in any way you need/want to, and remember that YOU and your health, mental and physical, come first. You are worth it, worth so much more than any words I can put together, so I think I’ll call it here:)

 

 

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/…

Must Haves for Tubies: A Guide to All of Your Tubie Essentials

Preparing for your first feeding tube? Or just adjusting to life with tubes? Here are some tips about some tubie essentials!

**always talk to your doctors when changing/adapting any parts of your treatment plan, my posts are strictly personal experience/personal research– I am not a medical expert, aside from my years of illness 😉

Gauze and/or Tubie pads—

Gauze and tubie pads serve the same purpose, they keep the tube site (aka the stoma) clean and dry, soaking up all excess drainage and keeping all outside gunk away! Some tubies have more drainage or granulation tissue while others hardly have any at all after the stoma heals from surgery; if you have a lot of it, continuously, gauze is often (not always) the best option. Tubie pads are much cuter and don’t require tape, making them easier on the skin. Some people use both, many people develop a preference as to which one they use, but either is a solid option for keeping your stoma clean and “happy.”

 

Great places for tubie pads (& great donors for newbie tubies!):

Homemade Tubie Happiness (on Facebook or Etsy)

Tubie Whoobies (Facebook)

Dorky Little Etsy Store (Etsy)

 

Syringes

 You’ll use syringes every day, you have to flush during and after feeds to keep your tube from clogging and many tubies take medications through the tubes, using syringes.

You can get various sizes and types of syringes, anything from a 1-3ml syringe (not used for tubes as much as for central lines), to 10ml, 30ml, and 60ml syringes. Luer lock syringes have smaller tips that can have needles screwed into them; they work best for flushing water/feeds through and the smaller ones can push clogs through. Slip tip/luer slip syringes have longer tips that are better for medications as they allow the dissolved meds pass through easier and leave less behind.

Your home health company should provide syringes, but if they don’t have the kind you like or don’t give you enough, you can buy mass quantities for cheap prices online.

 

Qtips, clean wash clothes, natural soaps

Keeping the tube(s) clean and dry is SO important. Change the gauze multiple times a day and pay attention to the stoma—clean gently with a warm, wet qtip when changing the dressing and wash with a cloth & natural soaps during your showers/baths/etc.

Don’t leave excess blood or drainage on the skin, it can cause irritations, itching, or pain. Some drainage and blood is normal, though. It’s no reason to panic.

 

Tapes/adhesives

 There are many types of tapes and adhesive bandages, as you go along you’ll figure out which best suits you! Your infusion/home health company should provide you with tape, but if they don’t or you don’t like what they give you, there is tape in any pharmacy or any store that has a health section.

Paper tape, transpore, or medipore tape are two of the easiest on the skin, but paper tape doesn’t last as long or stick as well and it is not water proof. It may take some trial and error, but you will figure out which works best, and if you use tubie pads you won’t need as much tape!

You should get tape from your home health/infusion company, but if not you can find it online or at the pharmacy.

 

Stoma creams/ointments—

Your tube site, aka your stoma, may cause you discomfort on and off even when it has healed. There are a lot of options for ways to try and minimize discomfort. You should ask your doctor before changing any part of your treatment plan, but these are some options to talk about…

Itching? Hydrocortisone cream, Benadryl cream

Pain? Lidocaine ointment

Skin irritation, granulation tissue, or bile burn? Try granulotion, calmoseptine, sudocrem, or any other barrier cream your doctor recommend

All of these items can be found on Amazon, at a pharmacy, or from your doctor…

 

Tubie belts, button covers, and tube clips

Along with tubie pads, you can get tubie belts and button or port covers that are especially helpful for children with feeding tube. Belts and covers help keep the tubes still and in place while being used or while not being used so that kids are less likely to mess with/pull on their tubes and cause harm to their tubes or themselves

The tubie clips help keep the extra tubing from dragging or getting caught on things when you are feeding on the go. These clips work well with backpacks and/or IV poles, whatever suits you. They’re cute and simple but can save you from yanking your tube out by accidentally stepping on it or getting it caught while moving around.

All of these items can be found on Etsy, a few of the best shops to find these?

Tubie clips: Crafting for a Cure Co. (They support Newbie tubies with their sales!)

Belts: Kangarootique (Etsy)

Heating pads

Heating pads help with pain, nausea, bloating, and so much more. You can get electric heating pads or microwavable ones. They come in all shapes, sizes, and patterns and you can get them anywhere– amazon, walmart, any pharmacy, or etsy.

One of my favorite Etsy shops and one of Newbie Tubies largest donors: Divine Comfort Rice Pks

Tubie Awareness Gear:

 Be loud & proud about being a tubie; there is no shame in having a feeding tube. There are so many cute shirts, bags, and accessories that help being a tubie be a little more glamorous. Don’t be afraid to let others know about your tube, awareness and confidence are important, and you never know who else may be out there with a tube hidden under their shirt, too?

A few places to find cute tubie apparel:

Tubie Love Gear: http://feedingtubeawareness.bigcartel.com/

Newbie Tubies: instagram @ newbietubies and/or positivelyrachel.com

 

Hopefully this information was helpful! For more, check out our tips list or visit my good friend, Carolanne’s blog, here for more information on tubie products!

Tips for Tubies: Tubie Love & Acceptance

I never could have imagined needing a feeding tube at 18 years old, and now, at 22 years old, I am still relying on my tube(s) — now I have two tubes and a central line. I’ve had tubes for so long and learned so much that now I’m able to teach others about them! My life took a huge change in direction when my health took a turn for the worst and had my tube placed; suddenly I was experiencing so many changes in my lifestyle and my body. I began to feel like I had zero control over my own body, and everything I had planned for my life, my future, began to slip away with every day, month, year, that my illnesses progressed. My feeding tubes took a little while to get used to, physically and mentally, because they cause bloating, they stick out through certain clothes, and they can leak and be kinda gross…but they also saved my life.

Learning to love your feeding tubes as well as yourself, both your body and your lifestyle, can be a challenge at first…I struggled for a long time to find confidence and acceptance of both my body and my tubes, I still struggle almost every day to pick out a shirt that doesn’t hug my tubes or my central line too tight or pants with a waistline that doesn’t hit my jtube… it’s not easy to feel confident when you feel like you’re the only one who looks like this, the only one with tubes, alone in the journey you’re facing.. my goal is to help others feel less alone.

Here are a few of my tips for adjusting to tube life and learning to accept the tubes as well as all of the way those tubes affect you, your body, and your lifestyle..

 

1. It can be hard adjusting to tube feeding and not feeling in control of your own body, but you should never feel ashamed of the tubes or the changes they can bring to your body. These tubes keep you alive every day. It may take time to come to accepting this addition to your body, and that’s absolutely okay, totally normal; but always remember that health comes first!

2. You get a feeding tube to restore your body and increase both strength and energy. Feeding tubes may be a bit of a pain, but they are meant to give you your life back, not take it away. Never give up on your dreams or your goals, although everyone’s healing times are different, and we all have different underlying causes/conditions, feeding tubes themselves don’t need to be looked at as a disability or a limitation; in fact, for many, they are the opposite.

3. Trying to eat while you’re a tubie is not anything to be ashamed of, and it does not invalidate your need for your tubes. Many people (with tubes) have a couple “safe foods” or still drink liquids, some can only suck on a piece of candy here or there, but either way, food or no food, you are still you, and only you know your body. If you can tolerate any oral intake and your doctor is okay with it, attempting to keep your system “awake” even with an occasional, tiny snack can be good and in no way invalidates your need for a tube.

4. Try to stay social! Being so sick and having a surgery like this often leaves one feeling exhausted, worn out both physically and mentally from the pain and inability to care for ones self; when getting out of bed is a painful challenge and showering takes more energy than was stored up for a whole week, it’s easy to get discouraged . Getting dressed and going out takes a ton of energy, but it is so good to get out, it’s too easy to become isolated! Friends will only take rejection so many times before they stop asking to hang out; even just suggesting a movie night or spa day at home is a great option to see friends, make plans, but not use as much energy. Your health comes first, but part of taking care of yourself means taking care of your mental/emotional health too, and having a healthy social life and support network is so important during times like these.

5. Feeling down in the dumps? During recovery and during challenging times throughout your journey it is so easy to slip into a “chronic illness mindset,”  which essentially means that to some degree, many have a time of feeling a loss and grievance over a “pre-illness” self, a self that can begin to disappear when illness takes over and we lose some of our abilities to function in the “normal” ways, or in the “normal,” functioning world.

If you sense yourself falling into one of these times, I highly suggest finding a way to remind yourself of your goals, your dreams, yourself. Try creating a vision board, definitely one of my favorite ways to remind myself of where I was before illness and where I want to go now, what I want to do in my future, and all of the things past, present, and future that give me hope and motivation. Just begin by thinking of all of your goals and dreams, even the totally unrealistic ones (being a mermaid, traveling the world in 30 days, learning to fly, etc.), and cut out pictures and words and quotes in bright, bold photos or lettering and then make a collage on cardboard or a tack board, heck put it on your wall if you want!  Hang it in a place where you spend the most time and allow it to encourage happy thoughts and positive thinking 🙂

I know people saying “mind over matter” and “just think positively, distract yourself” can be really frustrating or degrading, but positivity really is important if you want to make it through these transition periods and through your journey with chronic illnesses in general.

 

I plan to continue with more tips soon as well as some personal experiences with tubes, both good and bad 🙂 I am also going to be making a new vision board, and I will post a guide of how I did it when I can 🙂

Thanks for reading, don’t forget to check out the tubie items & artwork in the shop! Every purchase supports the Newbie Tubie Project, enabling us to send out another package & help another tubie adjust to life with tubes.

xoxo

 

 

** i am not a medical professional, just an experienced tubie sharing my experiences as well as those of other tubies who help me compile information to help inform others about what “tubie life” is like and how to make the best of it 🙂 Please consult your physicians before changing any medical treatments/procedures.

The Start of Newbie Tubies

During recovery from my second tube surgery just 3 months ago, which I admit was long and pretty brutal pain wise, I realized how lucky I am to have such an incredible family support team working around the clock to help make me as comfortable as possible. I know so many people, of all ages, are walking the same journey but don’t have the support system that I do, and because these conditions are so uncommon, most people have never heard of them or have no idea that anyone can require a feeding tube no matter how old they are or how healthy they have been.

 

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3/2015– In the hospital for a picc line infection and the decision was made to place a surgical feeding tube
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10/2017– first week of recovery from jtube surgery; the pain was unbearable, my sweet dog by my side 24/7 and constantly alerting me to pain and tanking blood pressures.

Sadly, most of us –myself included– just have to learn from experience, both our own and from online connections to people who are also experienced tubies or caretakers. I’ve had tubes for 3 years now, so I have a lot of first hand experience as well as what I’ve learned from my online community; so, if I can use my experiences and my knowledge to help bridge the gap and make the transition to tube life at all easier, I can’t imagine not doing it.

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2016– me on a “good” day; a summer day embracing my tube and my central line and not being afraid to let the world see those parts of my body that keep me alive
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3/2017- My post-surgical, bloated tummy with both a gtube and a jtube; sadly my tubes haven’t helped me gain weight, yet!

In December I began looking for small businesses, mostly on Etsy, that would donate tubie products and a few other care items to my cause and throughout the holidays I used my own funds to buy other products that were on sale, some items included were microwave heating pads, cute socks or fuzzy socks, soft throw blankets, journals and motivational books/journals, etc. I have a more detailed list I will share later on 🙂

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One of my first big donations–  heating pads from DivineComfortRicePks on Etsy; definitely recommend her products 🙂

In January I had enough to begin! I set up an online application and at this point (January 12) I’ve already had 10 applications! I’m so happy to have another way to share my knowledge, advocate, and most importantly, just to help others who are going through the same/similar things I have/am. It is amazing and inspiring and I couldn’t be more excited.

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My first package, it was smaller and more simple than what I send now, but it was for a beautiful friend who was anxious about surgery and it inspired me to continue with this project.

As excited as I am, I just can’t fund it all on my own. I use all of the profits from my paintings (whatever is left after canvas, paint, mediums, etc.) as my main fund, but that’s limited and depends on how much art I can sell. I do have a few other fundraising ideas, but I will also need to find more donors who are willing to help just because they feel that my cause is worth it.

 

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11/2017– My first public art sale/”show” at a local elementary fundraiser; I sell my paintings on my blog, on facebook, and just through friendly conversation/inquiry 🙂

Depending on the products I have on hand and the person (based on age and needs of the tubie), each package has a value of $25-$50, and that is without shipping. Shipping can cost a minimum of $14-$15 but can be as high as $30, again depending on weight and size of items and whether or not they will fit in flat rate boxes.

Right now, I’m still working with some donated items to create each package; right now, it is mostly tubie pads, some self care/pampering items, a handful of heating pads, blankets, and some extra little do-dads. But I’ve made a large dent in my supplies, so I am thinking a bit more about how to acquire some new donors and brainstorming some opportunities to find new products either by donation or for major discount!

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One of my favorite tubie pad shops, tubie whoobies, donated some incredible tubie pads for us.
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Some of my “do-dads” that just add a little fun, color, or comfort to a package for kids, young adults, or even kids/siblings of the tubie!

I love supporting small businesses and I include a card in every package with the information of each (business) donor so that my newbie tubies will be able to purchase more of any product they find helpful. I also post any business/shops that donate to my instagram, facebook, and blog, which ends up hitting over 3k people, many of whom are facing chronic illnesses and make great customers.

I know I have so many loyal followers who like to support all I do, and I don’t want anyone to feel any pressure to donate when it is not convenient for you; honestly, I’m sure I’ll be posting my amazon lists or shipping needs fairly regularly, so if now is not a good time, please do not feel a need to donate or purchase anything for me!

 

That said, here are a few ways you all can help right now:

  1. I accept re gifting!

**Did you receive some Christmas gifts that you know you aren’t going to use? Maybe too many of one item? I know many spoonies end up with lots of coloring books and fuzzy socks!

Or do you just have some extra stuff you aren’t sure what to do with? If it’s something someone could love, it’s package sized, and its in good shape, don’t throw it out!

Way too many adult or child coloring books? How about gel pens, markers, crayons, or any other drawing/writing instruments??

Small toys for children, stickers, etc? Common one, too many stuffed animals?

An extra planner? Fuzzy socks or small throws?

I guess you can say that I will be your “goodwill.” Let nothing go to waste or sit around unloved, instead, donate it to a good cause!**

See the lists below for more information about helpful products/items; I will take a lot of small items to save for someone who would love them!

 

  1. Purchasing a painting

**My art directly benefits my project! You can order my paintings on the blog or by contacting me directly through email or facebook.

Any profit – what I don’t use for paint/canvas/pouring mediums/etc.—goes straight into shipping and shopping for Newbie Tubies!

If you are local, we can meet in person to avoid shipping costs.

 

  1. Donations

The last option is just making a donation. If you want to make a monetary donation that would likely go towards sponsoring shipping for a box (or two!), you can do so through pay pal, send a check, or if you’re local we can work out a time to meet up for a cash donation if you prefer that.

I am also including my amazon wish list, “Newbie Tubies Wish List,” and my Etsy list, that have items, labeled/listed by priority (amazon), that I update based on what I could use at any given time.

If you are local and would like to donate but would rather pick up an item or two at the store when you go, I am including a list of other items as well. They can be dropped off at multiple locations, so please email me and we can make a plan (or if you work with my parents they will take the items as well). 🙂

If you are a small business, or know others with small businesses, and would like to directly donate products, you can contact me at positivelyrachel101@gmail.com about what product you have and how we can best go about shipping/picking it up!

Thank you so much for reading through all of that, if you made it! Below are each of the lists I have talked about; please, feel no pressure, it is just an option for those who have expressed an interest in helping out 🙂

Click each link below to go to said list:

Amazon list

Etsy list

A detailed list as well as my paypal account can be found in a separate post, here!

 

Thank you all so much!

Welcoming in a New Day

Another year gone, already?! I’ve read and heard so many people saying that time is flying by or posting long facebook posts about all that was accomplished or what they learned in 2017 and what their goals are for the new year. And yes, sure, I could do the same, but in all honestly, my illnesses have changed my perspective on the passage of time and watching one year pass and another begin just isn’t as huge of a celebration anymore.

My life has changed drastically over the last 5-6 years and I’ve grown and learned so much, but I’ve also lost many parts of myself and so many aspects of my life that used to create that excitement and significance of a year passing.

I’ve been out of school full time for three years now, and by leaving school I also left my friends, my social life, and my education behind. At the time, I had no idea I was leaving for an indefinite amount of time, and now I’m watching my friends graduate, some of them have even gotten engaged (s/o to my first year hall-mates who just got engaged to their high school sweethearts <3), and many of my high school classmates have even settled down and started families.

Before leaving school and having my illness progress into an extremely severe case, I had so many goals and plans for my life, but being dependent on feeding tubes and a hickman line (a long term IV in my chest) for nutrition and hydration and being dependent on my parents for everything from setting up feeds and sorting my daily meds to driving me to appointments and staying endless nights in the hospital has really changed things for me.

I no longer look at the long term or “big picture,” but instead focus on getting through each day. Some days I just focus on getting through each hour, trying to survive the time between each dose of nausea or pain medication. My every day life can get monotonous at times when I am home bound or bed bound, sleeping more than I’m awake, awake only to take medications, go to the bathroom, start new feeds, etc. The days blur together when you do the same things every day and have little to look forward to. Although many of my days are full of pain and discomfort, its always possible to find something to laugh at, smile over, or appreciate.

Instead of looking back on what has gone on in the last year or thinking of what I can accomplish in a new year, I continue to focus on each day and every small beauty and accomplishment that occur in that day. Although I don’t have any huge plans for my future, I do have dreams and goals, and I’ve gotten really good at appreciating the small things in life, if you take time to look, there’s something positive in every day.

Passion Over Predictability

Its really easy for my mind to go towards thinking about how my illnesses have stolen any predictability about my future; how they took me out of school, have forced me to accept that I may never have my “dream” job or may not even be able to work a “real job” at all. For someone who loves to plan and always wanted to know what was next, living in such uncertainty can be daunting. I fear living a life lacking companionship and never getting to fall in love or find my true soul mate, but then I’m reminded that my illnesses have brought to light so much in myself  that I never would have discovered if I hadn’t gotten so sick in the first place.

Instead of focusing on the things I likely won’t be able to do, I’ve started to consider all that I CAN do. I’ve discovered so much about myself that I didn’t even know was there; I have new passions and I’ve discovered talents I had no idea were hidden within me until I got sick and I have a new understanding and a new level of empathy both for the people and the world around me.

Ive strengthened relationships with my loved ones and lost many people who weren’t able to stick by me through my trials, I’ve broadened my outlook and see things in such a new and brighter perspective, and I’ve found passions that give my life more meaning than just being the “sick girl,” no matter what my body has in store.

Although I can’t eat, I’ve developed a relationship with food through cooking meals for my family. I love creating new recipes and trying new techniques with home made goods. Some people are shocked by my love for cooking, but it’s something I’ve always loved and now it’s a way for me to “enjoy meals” with my family.

I’ve rekindled my passion for photography and developed a love for painting– this one I don’t think anyone would have expected. I’ve never been the artist of the family, and although I can’t draw anything, I do have an eye for color, and I’ve found some painting techniques that work for me. Because I’ve discovered these passions and because people (not just my parents 😉 ) started buying my paintings, it has given me hope that even if I can’t graduate from college or work as a full time behavioral therapist like I had hoped, maybe there’s something more out there for me.

I’m blessed to have a community here at home as well as through chronic illness support groups online that support me in every way they can. I’ve had so much support from my local community and I’m so so thankful for each and every one of you. I also have a truly amazing family that does everything from help me with medications/treatments, drive me places, and help with any other around the house/medical things I need and they also help me be able to follow my passions and set me up for success. Not everyone in my situation is so lucky.

Chronic illnesses are exhausting and isolating, they take away so many parts of our lives that we use to identify ourselves. If you’re going to survive it with some sanity, you have to make a choice to not let your illness be the only thing that defines your life– it is always part of what defines you, but if you don’t have other distractions and passions, you’ll just about lose your mind.

 

My Holiday Inspiration

I was listening to a Christmas CD tonight while I was painting and I was struck by the lyrics of one song in particular. I don’t know what everyone else thinks or feels about this season (and really any time of the year), but I’m a strong believer in the power of love and this song just really hit home for me.

The song said, “The story of hope and joy and peace…. let anger and fear and hate disappear and let there be love that lasts through the year.” (Alan Jackson- Let it be Christmas)

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Christmas Paintings!

Maybe it’s just because I’m exhausted and emotional from post surgical pain, medications/side effects, and insomnia, but this just made me stop what I was doing and really ponder and appreciate. Christmas is my favorite time of the year, but it’s not always a picture perfect holiday. We’ve dealt with years of illness, our fair share of (extended) family drama and arguments, tears on Christmas Eve, and anything else a “normal” family (hah, normal?) may see. However, in the end, we come together and we celebrate love and we spend time together and that’s what matters.

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The day after hearing that song, my good friend posted this amazing post on Facebook about love and family and again I was just struck with how much I related to that post and how again the power of love was shining through and someone else was recognizing and sharing that. I’d like to share that post with you…

” People always ask me how I stay so strong and how I’m so positive. Well, I’m not always strong and sometimes I feel like nothing will ever be okay, but I’ll let you in on a little secret. I was born into a family of warriors. After each punch life throws at us, we help each other up and we battle it together. No one fights alone and every one of us has scars of courage to prove it. At the end of the day, our love outshines any cloud of darkness. Together we can do anything through love.”
-Carolanne Monteleone

My family and I (parents and sisters) have been through hell and back just trying to stay on our feet through each “punch”, each trial we’ve been through, but the key to that is that WE go through each trial. Together. I am never alone through this long and challenging journey I am on because I know my family will never leave my side. Sadly, I am one of the lucky ones; I’ve seen first hand that not everyone, not even every family member, works that way.

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Decorated IV pole

Love is one of the most powerful emotions a person can experience. It can make you do crazy things, but it also brings about the best things in life. To love unconditionally and to be loved unconditionally is one of the best gifts you could ask for, and you rarely find that outside of your family (until you get really lucky 🙂 ).

Families should always share unconditional love– parents, spouses, siblings, grandparents, cousins, everyone included! Life is short. Life is full of ups and downs, arguments, differing opinions, heart break, annoyances, cold shoulders, and regrettable moments, but it’s also full of laughter, hugs, big smiles, great photographable moments, tons of joy, milestone moments, and most importantly… LOVE. So why do we waste so much time being angry? Holding grudges? Arguing over the past? We should be together celebrating, making memories, being joyful, sharing happiness and love.

This Christmas season I urge you to love unconditionally. Find forgiveness in your heart for those who have wronged you. Don’t ever take being treated for less than you deserve, but always remember that life is short and relationships with loved ones are precious. Let only positive thoughts into your mind and share those positive thoughts with others; always try to focus on the good, there is so much of it.

Spread love. Laugh endlessly. Find your happy and share it with your loved ones.

Happy Holidays!

The Significance of the Holiday Spirit; Spreading Love and Generosity

The holidays are my favorite time of the year. Once we pass Halloween and get close to Thanksgiving I know it’s (basically) an acceptable time to bring out all of my Christmas leggings, shirts, tubie pads, and of course the hippo who sings Christmas carols.

It’s kind of funny that this is my favorite time of the year since health wise it’s often the most challenging. I was diagnosed with gastroparesis in December of 2013; this will be my 5th year not eating a Thanksgiving meal, my 5th year without any pie or turkey, my 5th year not having any snacks or candy in my stocking, my 5th year not eating our traditional Christmas brunch, and my 5th year seriously struggling with my health during the holidays.

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Our favorite gifts… donut pillows and blankies 🙂

But really, these holidays don’t have to revolve around food. I have much more to be thankful for even without eating. I have so much beauty and love in my life and I’ve found new passions and hobbies that not only bring me joy but help distract me from pain, hunger, and other symptoms as well as from the thoughts of all that my illnesses have taken or changed in my life; I prefer to focus on all that I’ve gained, all of the positive changes, and all of the things I’ve learned about myself and about life just from becoming so sick and being homebound.

The Christmas spirit is such a beautiful thing. I’m not even sure I loved it so much before being sick, but now I appreciate it endlessly. Even for people who don’t really like Christmas or don’t celebrate it, there’s just a contagious feeling of joy, love, generosity, and comradery that we lack during the rest of the year.

As I’ve gotten older it’s become less about gifts and food (obviously #tubiereality) and more about sharing that joy and love with others as well as finding joy in giving.

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Baxter stayed up for Santa 😉

I love finding special gifts for my loved ones but also finding ways to share with the less fortunate; sometimes this means giving money or gifts, sometimes meals or just festive cookies, or othertimes it is giving other gifts that I can make like simple cards with meaningful words, a painting, or a simple necklace or bracelet that I have made. In the past we have given gifts and food to local families or children who were in need, sent boxes of gifts to children in different areas or countries, and this year I’ve started a new nonprofit called “Newbie Tubies” for other individuals who are getting feeding tubes for the first time! I’m setting up both an online wish list and will eventually be asking for monetary donations for extra supplies and shipping, but I’m also selling my paintings in hopes to raise money to send out these packages to help ease the transition for new tubies.

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Breaking out the festive tubie pads 🙂

The holidays are a beautiful and special time. It’s filled with love and joy, gatherings with friends and family, and the gift of giving. If you’re able to give, I suggest finding a way to give to someone who is in need, whether that be an individual person or a family who could use some Christmas cheer, volunteering at the food bank or soup kitchen, or donating to an organization of your choice that is donating to those in need; ‘tis the season of giving and spreading the holiday spirit. <3

Lots of love and an early wish of happy holidays! 🙂