Thoughts 6 Years In

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

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

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

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

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

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

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

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

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

(I am single, though, just FYI 😉 )

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

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

xoxo

Newbie Tubies Round 2

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

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

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

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

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

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

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

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

 

WAYS AND RESOURCES FOR GETTING INVOLVED:

DONATIONS: what we need and how you can find it

EASY OPTION!

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

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

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

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

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

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

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

Volunteer Survey:

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

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

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

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

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

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

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

1.Tubie pads/clips/go bags

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

 

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

 

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

To Those Who Hold My Quality of Life in Their Hands

To Whom it May Concern,

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

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

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

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

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

this is a life sentence for the innocent

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

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

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

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

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

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

Delivery Day

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

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

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

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

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

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

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

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

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

 

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.

 

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/…

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!

Not Just a Patient

I am a person.

I may be sick, I may be a professional patient, but I’m also a person, but sometimes I feel like less than that when doctors, nurses, or insurance agents treat with disrespect, have biases against me before even seeing me or getting to know me, or neglect my physical or mental health because I am a challenging, serious case on the inside and a young, blonde, smiling 22 year old on the outside; invisible illnesses, especially in young women, often lead to many instances of mistreatment from medical professionals.

I’m almost never late to appointments. I have never missed, skipped, or forgotten an appointment. I email doctors with updates, questions, and reminders so that I can keep things going as efficiently as possible. I fill my meds, do my feeds, and try pretty much every alternative therapy suggested. I treat doctors with respect, no matter what. Not to sound stuck up, but I truly can’t think of much I could do to become a better patient, but honestly, that’s not my job in all of this. I am the patient, and I pay for these doctors to help me.

The idea of “doctors working for me,” is something I had never thought of before about a year ago when someone said it to me after I had a doctor say some hurtful things to me; I don’t work for the doctors, they work for me. They have no right to treat me with any less respect than they expect me to have for them or than they would have for another doctor, a friend, or a family member.

In fact, they should be treating me with great respect even if I’m not being extra outgoing or outwardly friendly. I don’t get paid to be sick. I don’t want to go to the doctor all the time. I’m often traveling hours to see them for just 10-15 minutes and they’re often not even able to help me or offer me anything new, so if I’m upset or not talkative, it’s just out of disappointment and frustration with my situation.

But doctors have chosen to be there, to help people. They choose their specialty, choose where they work, what age they work with, and they get paid very well for what they do. But just because they get paid and because they went through medical school doesn’t mean they are better people or even that they know what’s right.

Having invisible illnesses is hard. Many of these conditions are rare and under researched, doctors in small towns and even doctors who work in highly respected hospitals but aren’t specialized just don’t know these conditions. I’ve been to endless doctors who can’t pronounce the names of my conditions, don’t know what they are or what the symptoms are, or think they know and insist they know but are downright incorrect.

Sadly, a lot of girls with conditions like mine deal with doctors being rude or curt, abrasive, neglectful, biased and judgmental, and even abusive. Whether doctors are just having a bad day or whether they think they can speak to us in hurtful ways just because we are young or pretty, appear healthy, or smile and laugh like “normal” people and aren’t bald or in wheelchairs 100% of the time, I don’t know, but I do know that their actions and words can affect us for a long time.

When we are treated so poorly by people we have put our trust into, it isn’t just upsetting for a moment, it often affects our ability to put our trust into doctors and the medical system in general. Sadly, the only way someone like me can live at all comfortably is by seeing a multitude of doctors and working very hard to find treatments and medications that help minimize symptoms. We’ve put our lives in the hands of these people, we literally cannot go on without them. There is no excuse for them to treat us poorly, but when they do, we lose trust for them and we lose what faith we had in the system.

Doctors can go home and take off their white coats and eat dinner with their families, never having to think again about how that day went or what a patient said or did, but we go home and have to deal with the consequences of appointments for days, weeks, months. We rely on doctors and nurses and insurance agencies not just to be alive, but to have any comfort on a day-to-day basis. It’s not an option whether or not to have doctors or treatments, so if we lose one doctor, we have to work hard to find another one who is as good or better and willing to take on a tough case.

Conditions like mine mean you sometimes have to be both patient and medical expert, which is frustrating and exhausting. I don’t ask my doctors for magical treatments or cures that aren’t out there yet, but I do ask them to treat me with respect and dignity. I’m a person, not just a patient.

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.