-Tube clips (for long tubes)
-Cute medical masks
-For home made tubie friends–Unused button tubes, extensions, long tubes
Anything else that will fit in a care package or help make a tubie feel more comfortable post-surgery/during their transition to tube feeding!
I also accept re-gifting! If Christmas brought too many fuzzy socks and coloring books or one too many scented candle and bottle of the same old lotion, I’m happy to take anything off of your hands that you just wont use!
Spring cleaning brings about lots of unwanted (and unused) items? Donating to my project is just at meaningful as donating elsewhere! Keep it in mind for your extra, package sized goodies.
You also always have the option of purchasing a painting! All profits go towards shipping and shopping costs for newbie tubies!
If you are interested in making a monetary donation, my pay pal account is: firstname.lastname@example.org
You can contact me at email@example.com if you have any questions, want to mail or drop something off, etc.
For more information about ways to help with the project or just about how it came about, please check out the blog titled “The Start of Newbie Tubies” 🙂
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.
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.
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 🙂
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.
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.
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!
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:
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!
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.
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 firstname.lastname@example.org 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 🙂
When I was little I could only wear my socks inside out because I couldn’t stand the feeling of the seam rubbing on my toes. We tried buying “seamless” socks, but let me warn you, they still have seams, they’re just really, really thin. I would fuss and cry and refuse to put on tennis shoes because the feeling of that seam rubbing on my foot caused me extreme discomfort, if not true pain. Back then, my family thought I was just a crazy kid who hated socks and couldn’t have any bumps in her hair for a ponytail, but none of us had a clue what was really going on.
You may wonder why the heck it matters that I hated socks as a child, but I’m getting to that. “Overstimulation” is a term that most people don’t often think of in reference to adults, but its something that greatly affects me in my every day life. No, I don’t have ADHD and I don’t have autism, but my Dysautonomia functions in the same area of the brain as ADHD and Autism and can affect the same nerves in my frontal lobes that would be affected if I did have ADHD or Autism.
Because I have both Dysautonomia (dysfunction of the autonomic nervous system) AND chronic migraines, plus both chronic joint pain and fibromyalgia, my sensitivities have just kept growing and growing. It started with socks and small sounds that I just could not get over—people chewing loudly, my window fan making the smallest clicking or rattling noises that no one else could pick out, or birds waking me up by cheeping outside of my window, giving me headaches and starting my day out in a funk on beautiful spring mornings. Now, I hear everything, and it echoes in my head making not only my migraine worse, but causing me pain throughout my whole body.
I’ve had headaches for as long as I can remember; in 5th grade I was complaining to my parents and my doctors about painful, daily headaches, but since I was around the time of hitting puberty they figured my hormones were starting to change and it was due to that. It wouldn’t be until about 5 years later that I saw my first neurologist and finally started making some progress towards figuring out exactly why sounds and lights and touch could be so hard for me.
I was diagnosed with Dysautonomia/POTS and chronic migraines. They called me their guinea pig because I was their youngest patient to date and they just couldn’t figure out all of the pieces, but my neurologist helped get me on a good migraine medication that helped minimize symptoms for awhile, until I started building up tolerances and developing new symptoms. It only took about a year to be sent to new specialists at a different hospital, and eventually higher level specialists in a new state, and then even higher level doctors in a specialty clinic over 7 hours away.
Six years later and my migraines are still not managed and my sensitivities to sound, noise, touch, and even smell are more sensitive than ever. When you hear someone say, “migraines are more than just a headache,” it’s no joke. Just my family members eating cereal or soup and having spoons hitting bowls repeatedly is enough to send me into full body pain. Having the TV on and conversations going overwhelms me so much that I end up fully zoning out and having no clue what the person is saying to me. I can’t be in the same room with my own family when there are certain noises or activities and that is extremely upsetting both for me and for them. It’s taken time for them to realize it’s a real, explained symptom for me and it is still hard for me to grip without feeling a lot of guilt and sadness.
Today, my nerve pain and sensitivity keeps me from wearing jewelry on my wrists or neck. On bad days, I can’t stand to have my hair touching my neck or the cord of my heating pad rubbing against my leg in bed. On worse days, I don’t want to be touched or even touch my own skin because my body feels like one giant bruise. I can’t put lotion on, get dressed, take a shower, or do any daily self-care tasks without being in pain on these days.
I carry earplugs and have a noise machine to try to block out the sounds that cause me distress or pain. I hate these sensitivities because they steal so many moments, so many memories from me. They cause my family anxiety and stress and they cause me frustration, pain, guilt.
Overstimulation and hypersensitivity aren’t anything to take lightly or shrug off if someone opens up to you about their struggles with either/both, try to listen and understand and if there’s something you can do to help make that person comfortable, try to do it. Changing something small like how loud your music is or whether you eat with a metal spoon or a plastic spoon doesn’t matter in the big picture, but being able to share that extra moment with a loved one or a friend because of that small effort can mean so much more than you may realize.
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.
It has been way too long since I’ve posted. I’ve been struggling with symptoms affecting both my mind and my body and I just haven’t had the brain power/energy to finish a post! My illness is a physical illness, but it stems from my brain and my autonomic nervous system so I have both neurological and physical symptoms, many of which are “invisible” to anyone who doesn’t know about them.
I’ve written before about how my Dysautonomia causes severe brain fog—this includes problems with word finding and sentence formation, short term memory loss, trouble focusing/short attention span, and a lot of day dreaming/zoning out. Right now my Dysautonomia is flaring because I had a virus and I’m not getting the full 2 liters of IV fluids I am supposed to get because of a back order that is in place due to the hurricanes that took out a major supplier in Puerto Rico.
Not only is this flare causing me to have extreme brain fog, but I’m having other symptoms as well such as falling asleep or losing consciousness while sitting or standing due to lack of blood flow to my brain. This is a common problem for those with NCS (one of the types of Dysautonomia that I have) but it is not only terribly annoying and embarrassing, it’s debilitating and limiting because I can’t drive or plan anything that involves standing or sitting for too long, and it’s hard to be around other people because I can fall asleep mid-sentence or even worse, in the middle of someone else’s sentence! Let’s just say I won’t be going on any first dates any time soon 😉
Because of my flare of Dysautonomia as well as an increase in severity of my migraines, I also struggle with overstimulation or hypersensitivity to sound, noise, touch, and smell. Overstimulation is something that a lot of people would think of in relation to autism or ADD in children, but it’s something I, as an adult, struggle with every day. Any loud or repetitive noises or bright, colorful, or flashing lights can send me into a terrible episode of overstimulation that leaves me in full body pain and spasms as well as with a migraine that doesn’t respond to medication. Some days my skin hurts to the touch like there’s a bruise spread across my whole body. Before my diagnosis my family thought I was just crazy and picky about noises, but now we know my brain really just can’t handle a lot of these noises, lights, etc.
Winter is always a challenge for me because I deal with intense pain flare ups due to the cold, lots of migraines, and my GI system always gets even worse than normal once I hit November/December, this year just seems to be throwing a few curve balls at me with the neurological symptoms being so significant on top of the normal flares.
Luckily I’ve learned how to adapt and work around most of these symptoms so I’ve still enjoyed getting ready for Christmas and our Christmas day was lovely and (relatively) peaceful. It’s so nice having my family home for an extended break—having company and my care team here makes things both easier and much more fun J
I hope to start being able to use my brain a little more so I can update on some more things and also share more about my Newbie Tubies Project and how I’m hoping to get that going by the New Year!
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.