Guest Post: 10 Tips to Life with Lupus

Lupus is a condition that causes your body’s and your immune system to fight against you 24/7. It can affect almost every part of your body including the heart, skin, kidneys, lungs, joints, blood cells, and even the brain. It is a chronic condition, it won’t go away, so once you’re diagnosed with Lupus, you have to learn to live your best life with it. The effects of lupus vary from person to person, sometimes being completely debilitating, sometimes just coming in waves, sometimes being minimally “visible.” All you can do is manage symptoms and make necessary changes to your lifestyle and stick to treatment, most will be able to live a happy life.


Here are ten tips to live a little better with lupus and make the best of this life:

  1. Don’t Compromise on Rest and Sleep
    Fatigue is a common symptom of lupus, which can be dealt with by maintaining a healthy sleep cycle and abstaining from overwork. Make adjustments to your bedroom to make slumber time as comfortable as possible. Do not consume any stimulants after sunset, in order to achieve7-9 hours of uninterrupted sleep at night.
  2. Exercise Daily
    Regular exercise boosts the immune system, which is why it is highly beneficial for everyone living with lupus. However, as lupus triggers increased fatigue and joint pain, do not opt for high impact workouts. Stick to lighter exercises, such as walking, cycling, and yoga.
  3. Quit smoking
    Smoking is injurious to the heart and lungs, which are already compromised in the case of lupus. If you want to prevent early onset of cardiovascular disease and lung problems, break the habit of smoking cigarettes and other stuff that could instigate charges for a drug crime.
  4. Avoid Drinking
    Many people having lupus suffer from kidney failure at a young age. Alcohol is very bad for the kidneys, especially if they are already in a vulnerable position. Alcohol can also react with certain medications prescribed to lupus patients, causing side effects or lowering efficacy.
  5. Keep Clean
    Since lupus makes us susceptible to infections and allergies, we need to be extra concerned with hygiene. Always carry sanitizer when you leave the house, refrain from touching contaminated services, and prefer meals prepared at home.
  6. Protect yourself from UV Rays
    Sensitivity towards the sun is another common symptom of lupus, so avoid going out during the day and consider yourself a vampire. If you have to go out in daylight, wear sunscreen with a minimum of 30 SPF and try to stick to shade. Extremely bright indoor lighting can also expose you to harmful UV rays, so fluorescent bulbs at home can be covered with a light shield that filters the damaging rays.
  7. Keep your Mental Health in Check
    Stressing out can set off and aggravate flares. A flare in lupus patients can be defined as an instance where regular symptoms suddenly get severe or worse than usual. You should indulge in activities that relax your mind and body. If you are experiencing anxiety or depression, psychotherapy is recommended to cope with it.
  8. Eat Healthy
    There is no restrictive or special diet for people living with lupus. You shall be fine as long as you eat well-balanced nutritious meals. Oily fish is particularly good for you, being rich in Omega-3 fatty acids that help combat inflammation. A Vitamin D and calcium supplement will surely benefit your bones and joints; also, avoid very spice food, as it may instigate irritation, heat, and development of ulcers.
  9. Try Alternative Therapies to manage Pain
    Acupuncture, yoga, tai chi, chiropractic techniques, biofeedback, and hot baths are a few alternative methods to alleviate pain. They will help you relax and cut back on pain killers.
  10. Join a Support Group
    It always helps to acknowledge that you are not in this alone. Look up lupus support groups in your area where you can meet other people facing the same challenges as you. You may gain valuable advice for managing symptoms and make a few good friends for life.
Continue reading Guest Post: 10 Tips to Life with Lupus

Spoonie Survival Guide: Happy Holidays!

Happy Holidays!

 If you’re anything like me, it doesn’t feel quite as festive as it normally would at this time in December – there’s just not as much of that fabulous, positive, contagious Christmas cheer! Most of us are still looking to avoid contagion, but that forces us to drop holiday gatherings, our long time traditions, & even just shopping/present prep!

That said, even pre-COVID19 so many people face challenges during the holiday season. So many deal with loss, with family struggles, with personal struggles. Whether it is due to health, both physical and mental illness, relationship troubles (family, friends, ex- es, etc), poverty, loss, or any of a long list of possible difficulties and struggles one can face, this is one of those few times we can all relate so closely to one another.

I’ve been working on a “holiday survival list” for chronic illness patients, but spoonies /tubies/ sick people and their families are definitely NOT alone when it comes to holiday and this list should work for anyone, sick or not.

Here are things I’ve learned over the years about making the most of the holiday season, no matter what your situation may be!

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**Do YOU.  ** You are in charge of you. Only you know what you are feeling and what your body needs, but heads up, the holiday season offers lots of tempting opportunities to push one past their energy/illness safety limit – aka, have too much fun for too long with far too little sleep!

Listen to your body and mind, go into things knowing you are going to make the most of every minute, but that once you hit your limit, you are allowed, even encouraged, to take time for yourself. Participating in moderation and resting when your body needs it will help you be up for way more than if you over do it on one activity or gathering. I speak from (much) experience.

The spirit of Christmas is so important for me, I love love love to give. I love to see others receive, always have. If you know of something your loved ones truly cherish about the holidays, a traditions, a favorite meal or type of Christmas cookie, or a gift they are begging Santa for, this is where you use your spoons, even if you think it’s a crazy idea or you may totally wear yourself out, give it a shot.

Regardless of the outcome, you showed interest and care and even bigger than that, you have given them the ultimate gift many of us spoonies have to offer, you chose to share your precious, limited time and energy with them. Not just buying something for them, but putting effort into something you know they care about and then using up all of your spoons doing so.

**Expectations. Lose them. **

Planning ahead is a terribly difficult thing to do for those with chronic illnesses like EDS because you cannot predict the severity of your symptoms ahead of time, but I assure you, holidays will wear you out! 

If you start the holiday out with the attitude of “I’m going to try to do as much as I can, but it is okay if I need to rest,” you’re going to have a better day than if you went in thinking…

”I have to do it all, I have to keep up with everyone else, I can’t let anyone else down…” 

Your family or friends will just be so happy to have you able to take part in what you can. Resting here and there will allow you to do more in the big picture, so don’t fear down time or quiet time – the holiday chaos will be there when you wake up!

Feel NO GUILT for what you can’t or don’t feel up to doing.

This is an important one, too. If you need a break to lay down, to take medications, to have some time to recharge, THAT IS MORE THAN OKAY. That is more than okay even if you are not sick at all. If you’re at a family gathering and don’t want to sit at the table while everyone eats and you are just plugging away at your feeds, it’s more than acceptable to excuse yourself and rejoin the group later on.

Sometimes people, even our own families, say things that make us feel judged, patronized, or a little guilty about how we handle ourselves, decisions we make, or how much/how little we participate in family happenings, but that isn’t just something spoonies experience, it can happen to anyone.

Remember, only you feel what you you are feeling. No one else can. Only you know what you need, all you can do is tell your loved ones what it is, let them know if there’s anything they can do for you (usually not) and then just send them on their way and get some rest. Never take any of it personally, they simply can’t understand because only you feel you. No one else can feel what you are experiencing, especially healthy people!

**CHANGE is hard. **
Especially when it’s holiday traditions. But change happens!

Healthy or sick, we should be paying attention to what is important to one another and trying to keep those traditions going while also accepting that some things are going to change, and that is totally okay, too. If there’s a tradition (or activity) that you want to be involved in but may need to tweek just a bit to make it doable for you, you have to let people know! 

It can also be pretty special to be able to start new traditions, even if we can’t do everything. If you put your mind and your heart into the holiday, you can have a good one. I guarantee it.

**Acceptance.**

Accept your situation and be open to that of others. Another big one.

This one hits home for me this year. Some family members, my own health and the path I am on because of it. It can be so hard to face reality when your reality, present and future, can sometimes appear so bleak & brutal, but it’s so important to hold onto every ounce of positive energy and a positive mindset you can, to learn to balance your reality and acceptance with hope for a better tomorrow…

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One thing we spoonies are experts on is taking a new situation and adapting, making it work in the best possible way for us, for our loved ones, for whatever it is we need.

Accepting where you are today or even accepting that you will likely always be sick to some degree does not mean you stop hoping for improvement, for more good days than bad, for the ability to live a life worth living. One of the most important pieces of advice I offer?

Don’t give up on life. Accept. Adapt. Thrive. Know you aren’t alone.

Shop Away, Newbie Tubie Style

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

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

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

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

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

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

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

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

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

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

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

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

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

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

ShoppingList: NewbieTubies Supplies (forever changing inventory)

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

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

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

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

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

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

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

FUZZY SOCKS – who doesn’t love these? 

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

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

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

Button Buddies

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

It’s not difficult to find dolls with wheelchairs, crutches, casts, glasses, even diabetic kits and dolls who are beautifully bald, but feeding tubes? No way, tubes are not good for the brand, not something kids recognize, not cool like casts that can be signed or wheelchairs that can allow you to take the special, rarely used elevator at school – yet for those who have tubes, these toys can make an incredible impact, and that is why I’m here to be their voice.

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

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

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

If the buddy goes to a child with a parent who is a tubie, the child can now not only watch while their mom/dad is “eating” or doing fluids or changing the dressing, but with a buddy, the child can now participate by using the buddy to do these tasks right along side their parent! The same is true of siblings of tubies, classmates, and tubies themselves as they learn to care for their tubes and go through procedures, hospital visits, tube replacements, and feeds or medications that they have to do daily at home or inpatient. 

Button buddies allow everyone in the tubie’s life to be involved in as much of their loved one’s journey as possible in a hands on way that can help them learn and grow and understand all of the unknowns and fears they came in with. Heck, even care takers can get a practice round in on a buddy if they’re feeling anxious about how to hook up their tubie or access a line, prime out the air, etc.

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

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

The incredible thing about play is that children will take in a new toy and hardly even notice any “difference” in it, in this case they may ask what the tube is, maybe what it is for, but likely no more than that, and then it’s just another toy. There’s no judgment, no prejudice, simply children playing together, learning as they go, growing, and that in turn becomes them widening their perspective and accepting one another with no qualifications, no recognition of their differences – just as they took in their toys.

When I give a button buddy to one of our little tubies and they see that tube, the light that comes into their eyes is just incredible. Suddenly that toy & it’s very expensive piece of plastic in its tummy changes how even the “littles” themselves see the feeding tubes, how they accept their own tubes, how they accept themselves. IMG_3006

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

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My goal this year is to spread the love and the comfort that my button buddy has brought me with as many of our “newbies” as I can, and that’s all in thanks to our donors who have donated the tubes and stuffed animals or the funds for our animals and the shipping costs it takes us to send out our packages.

We’ve had incredible donations from both AMT (Applied Medical Technology, Inc.)and eSutures Medical Supply Sales, both of whom are making it possible for us to send buddies to an incredibly increased amount of tubies this year than any year past ( we are still always looking for low profile tubes) and I just can’t wait to share this with you all….

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

PayPal & Venmo are both @positivelyrachel.com

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

Here is our AMAZON Buddy link!

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

Xoxo

Rachel

A Day in the Life of a Migraineur

A guest post by John Martinez with Axon Optics…

A day in the life of a migraineur is not a normal day. It’s like a day of playing dodgeball, but if you get hit, you have to call out of work and live with head-splitting pain. Migraine triggers can appear at any time, and the migraine can rear its ugly head on a moment’s notice. 

Living with migraines can sometimes feel like going on vacation, without any of the relaxation of going on a vacation. You need to check the weather, make sure you’ve packed everything you need, and always have a backup plan in case things go south. 

If you have a friend or family member that experiences migraines, this is worth a read. A day in the life of a migraineur revolves around migraines: avoiding them, treating them, and explaining them to others. 

Avoiding Migraine Triggers 

A day in the life of a migraineur often includes dodging triggers. The list of migraine triggers goes on as long as a migraine itself. Any of the following could also cause a head-splitting migraine:

  • Hormonal changes 
  • Changes in the weather
  • Stress 
  • Certain levels of physical activity
  • Strong smells
  • Bright lights
  • Loud music 
  • Dietary changes 
  • Caffeine or alcohol 

 

A day in the life of a migraineur may include turning down an invitation to happy hour, staying inside when they want to go outside, or trying to change an event to a more quiet and low-key location. All the while, the migraineur is attempting to stay calm, because too much stress may just bring on the migraine they are trying to avoid. 

Throughout the day, migraineurs may be recording their diet and activities in order to discover and control their triggers. Not all people with migraines are triggered by the same things – the process of pinpointing triggers and then avoiding them can take up an entire block of a migraineur’s day. 

What’s In A Migraineur’s Purse? 

It’s not always easy to dodge these triggers; how are you supposed to know when a change in barometric pressure is going to cause numbness and pain throughout your entire body?  

If migraineurs can’t avoid migraine triggers, they will have to treat migraine symptoms. This means carrying a bag with everything they need to deal with migraines. 

Medication 

Over-the-counter medications offer some of the quickest relief to migraines. It’s always good to have your painkiller of choice on hand when symptoms start to arise. Over the counter medications include Aleve/naproxen, Excedrin Migraine, ibuprofen, and Motrin migraine. 

For those of us who have severe, chronic migraines there are also prescription medications that you can take when you have a migraine coming on, imitrex being the most commonly used. There are quite a few options for daily medications and even some shots that are supposed to work for a month at a time, but these are new and not always covered by insurance, like any other med, they don’t work for everyone.

Hormonal medications may also help to regulate migraines – but this is not applicable to everyone. Female migraineurs should talk to their doctor about taking contraceptives or other hormonal medication if they have migraines. 

A Cold or Hot Compress 

This lifesaver can also provide relief in a pinch. Cold or hot compresses against the back of the neck or on the forehead can help to numb some of the excruciating pain of a migraine. Unfortunately, it won’t treat blurry vision or other types of numbness. 

Sunglasses

I recommend FL-41 Glasses specifically!

Migraine glasses, also known as FL-41 glasses, have begun to give a lot of migraineurs hope. These rose-tinted glasses have been crafted to block out rays that trigger photophobia (sensitivity to light.) They can be worn indoors or outdoors. Migraineurs who don’t enjoy wearing glasses can order FL-41 contact lenses.

If you have ever experienced photophobia, you probably get significant relief by wearing sunglasses indoors. However, research shows that over time, it can make your light sensitivity WORSE. Maybe too much of a good thing really can be bad? If you want more information on this, check out, “Why Wearing Sunglasses Inside is a Bad Idea”   by John Martinez at Axon Optics.

Caffeine – coffee, coke, etc.

Like hormonal medication, caffeine can either cause migraines or treat it. A small can of cold brew or a soda sometimes helps migraine patients, but this is not a widely successful trick and is definitely not a long term answer. 

The Dark

Sometimes nothing helps with a migraine and you are stuck laying in bed in the dark, wishing away the pain and nausea and whatever else comes along with your migraine, everyone has their own “aura” or mix of symptoms – light sensitivity and sound sensitivity are some of the most brutal triggers, so stepping out of your cave, trying to turn on a light to focus on a task, or even just looking at your iPad to Netflix your migraine away can cause a massive wave of killer discomforts of all kind.

Eye masks/sleep masks and ear plugs are your friend. Noise machines with peaceful background sounds like fans, white noise, rain, etc. can also help block out the more painful noises and give your brain something to focus on that ins’t “dangerous.”

Support

Most importantly, don’t fight alone, except when you’re mid-migraine and can’t stand even the smallest of noises.

Whether you find your support through religion, family or friends, your dog, or an inspirational playlist on your phone, it is important to have something that helps you stay positive and hopeful. There are also support networks on facebook and other social media sites that can make a big difference. Of course, having a supportive doctor is also very important, so keep that number in your wallet, too.

…But Don’t Take Our Word For It 

Every migraineur has a different experience. While some people feel like an ice pick is piercing their temple, other people experience numb fingers and blurry vision. (These are real quotes, by the way.) Some people may experience symptoms for mere minutes, others, for hours or even days.

Whatever it feels like, it doesn’t just feel like “a headache.” Lucky for most, you won’t ever have to feel this pain, but part of being a migraineur involves telling people that migraines are not just headaches, that they are serious, and that they need more awareness, more research, and more treatment options, much like any other chronic, misunderstood illness.

 

Guest blogger John Martinez, in association with Axon Optics, edited / posted by Positively Rachel as an awareness post for chronic migraines

Thank you, John for sharing with us, as always I am excited and grateful to have a guest blogger!

If you want to read more about migraines and how they affect daily life, you can check out my own work on a previous post, “Chronic Migraines: More Than Just a Headache” or “Kids Get Migraines, Too!”.

Strength for All; A NTCP Shirt Fundraiser

In October of 2017 I had my GJtube surgically changed into two separate tubes – a jtube and a gtube – after months of tube trouble due to my severe dysmotility throughout my GI tract. This surgery was insanely painful due to complications brought on due to my EDS, so my recovery was long painful, and during that time I relied on my parents for EVERYTHING. I couldn’t sit up in bed on my own, couldn’t walk, shower, brush my hair, or seemingly do anything else because all of these movements require abdominal contractions/tension and every time that happened I was in excruciating pain.

It was during that time that I began thinking about how lucky I was to have my 24/7 support team who were there for me always, no matter what, no complaining, and I just couldn’t bear the thought of anyone going through this alone, so I decided to be there for every tubie I could. Chronic illnesses are one of those “find out who your real friends are” situations and it can be brutal and shocking seeing who it is who puts the effort in, my goal is to step up and be that person when I can, but also to encourage others to do the same; so two years and lots of work later, over 300 packages have been sent out to first time tubies. 

To celebrate this milestone we’ve started a shirt fundraiser to raise money to contribute to Newbie Tubie Care Packages! 

Living with chronic illnesses or other conditions that cause one to be unable to eat enough to sustain themselves on their own and cause the need for a feeding tube is incredibly challenging, and that’s a massive understatement. Imagine life without your favorite foods , without the ability to go out for ice cream or coffee or a drink with friends, not sitting around the table and eating thanksgiving with your loved ones, having to come up with options not involving food for social gatherings or first dates, and explaining to people why you aren’t eating or what that little knobby thing on your tummy is.

Feeding tubes require incredible strength and self awareness, they are life changing, but they are nothing to be ashamed of, they are a gift that gives life back to more people than you would ever imagine – young and old, boys and girls, and due to so many different causes or conditions, feeding tubes are so much more than just a life sustaining piece of plastic, so join us in spreading awareness and celebrating year 2 of Newbie Tubies as well as the gift that so many of us are given through feeding tubes – the gift of nutrition, energy, and a life we may not have had without them.

Whether you’re a tubie or not, purchasing a shirt shows your support and love for tubies and contributes to our care package program that sends packages (free of cost) to first time tubies. No matter where your strength comes from, these shirts represent that strength.

We run on donations and these shirts are super cute, so it’s a win-win! You do not have to be a tubie to be Tubie Strong!  Purchase a shirt for yourself and wear it proudly, no shame, just strength and power in your self and appreciation for the gifts we often take for granted.

Thank you so much <3

*Link below! Currently open until Nov. 21st.*

**SHOP HERE!**

you can also donate to PayPal @ rajinone@aol.com or check out or wishlists on Amazon or Etsy!

Love & Gratitude,

Positively Rachel

Newbie Tubies turns Two!

In November we will hit our 2 year mark, I cannot believe it! We will also have sent out OVER THREE HUNDRED PACKAGES at that time! We have already had over 300 applications sent in and have filled at least 75% of those, how incredible is that? 

Unfortunately right now, Newbie Tubies has no remaining funds for shipping boxes or purchasing the extra items that aren’t donated, so in order to continue as we hope to, we need YOUR help to get there. 

We’ve had some incredibly generous donors who send us tubie pads, heating pads, supply bags, and other tubie products and we have shopping lists for amazon and etsy for easy online shopping as well as shopping guides for inexpensive items from target, walmart, & fabulous dollar store finds, but none of that covers the $14 shipping cost that each box costs, and I simply can’t afford to pay out of pocket for any more boxes.

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There are so many ways we can raise money, but I cannot do it alone! 

ALL of my artwork profits go towards shipping costs, so check out the shopping site as well as my facebook page to see the artwork that is available and supports this project! There are also vinyl bags, shirts, onesies, and decals that are made to support the project as well! I take commission for both paintings and vinyl so email me or message me if you have an order!

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True amazement and joy when the littles get a buddy, this single toy helps them feel confident and less “different” from others.

We hope to do a shirt fundraiser, so keep an eye out for that as well as for an upcoming raffle! Share our page and these posts so we can get as much attention as possible, every tiny bit helps.

If you are a recipient of a package share a post about what Newbie Tubies means to you, how it helped you and why it’s a cause to donate to. Hearing personal testimomy about what we do and why and first hand experience about the impact it makes can go far, so share that on your social media pages, email it to your doctors or family members and have them share it – let’s MAKE THIS HAPPEN TOGETHER! 

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My first package sent! Now I’ve sent over 20!

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A newbie tube with her matching, tube fed hedgehog!

I hate asking for monetary donations, but right now, I have to do so if I want to send out any more packages. If you have fundraising ideas or are interested in helping out in any way, I’m all ears. 

Thank you so much for reading, sharing, and helping in any way you can. We truly appreciate every one of you and you are making a difference for so many.

 

 

Information for donating and contact information:

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

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Facebook: Newbie Tubie Care Packages // Positively Rachel

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Email: positivelyrachel101@gmail.com

 

Mermaid Soul

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

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

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

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

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

When Life Gives You Limes

People often use the expression, “when life gives you lemons” when things aren’t going quite right, you’re likely familiar with the phrase? Well, humor me as I explain why I’d like to adapt the statement to, “when life gives you limes.”

In my opinion, lemons are tasty and you can do so much with them, many options being super simple! For example, of course you can make lemonade, then there is lemon cake, lemon bread, lemon cookies, pie, and more! I mean lemons are great for tea, detoxing, or simply put in your water. Lemons are just so handy, but limes? Limes are a little bit more complicated, they’re slightly more sour and although you can use them in drinks and recipes, it’s not quite as common, kind of like chronic illnesses – complex and uncommon.

That said, I have quite a few limes in my life. I’ve been diagnosed with over 10 chronic illnesses, a handful of which are seriously debilitating and progressive. I’ve had to take medical leave from the school of my dreams, now having watched my classmates graduate without me, and put my future goals on hold. Because of my symptoms– mostly nausea, pain, and fatigue– most days I am not even able to leave home and I spend majority of my time in my bed resting and sleeping.

I have new limes thrown at me every time a doctor gives me a new diagnosis, every time a treatment doesn’t work, and every time I wake up feeling worse than I did the day before. However, I’ve learned to take these limes and use them to help me find all of the gifts in life, all of the things that I am so thankful for. When you’re given challenges, sour moments, it really teaches you to be so much more thankful for every little moment or object that makes you feel joy.

Some of the sweet things in my life that regularly help me get through the sour moments include my dogs, Baxter & Dexter, my family, good music, and my online support network. There are also little gifts day to day like a 75 degree day, a special visitor or getting something in the mail, being able to take a walk, an Epsom salt bath, taking a drive and seeing pretty scenery, etc. Lots of small things bring me joy, and I am so appreciative of every happy moment I am given.

I’ve had a lot of curveball limes recently, broken tubes, line infections, flare ups of pain and nausea, exhaustion, and doctor troubles to name a few, but I’ve learned to put up walls that keep all of this from affecting me too much, only allowing through the smallest amounts of stress or worry possible – the last thing I need on top of my illness happenings? Extra limes.

Learning to filter out some of the extra stressors, even the smallest things you may hardly notice can make a big difference in the long run. Hold on to every happy moment, every simple pleasure, and let go of negative energy; hold no grudges, and never go to bed or leave your loved ones angry. Forgive, love, laugh, and remember not to waste precious time on trivial issues. When life gives you limes, take a moment to find your own sweet moments and happy thoughts, play your favorite song or cuddle with your dog, text your best friend or your mom, take time to express yourself, share your love and gratitude, spread the joy in random acts of kindness, random words of affection. Life is too short to be sour.

 

Chronic Illnesses: Who Knows?

In the past few months I’ve seen increased frequency and severity in my symptoms and even new symptoms coming to light. When I have flare ups or new issues I often become more aware of my current physical state, and ironically, while doing so, I usually think I’m better off until these harsh realizations, moments of brutality that shine a light on the fact that no, I’m not better, I’m actually worse, but I’ve just gotten used to being sick, used to this flare up that just never left, that became my new “normal.”

Though I’m used to high levels of pain, severe nausea, frequent migraines, fatigue, etc. when I wake up and have new symptoms or symptoms I’ve had before all of a sudden “amplified,” it can be super frustrating, discouraging – not to mention painful. But when these “flare ups” come about and decide to stick around for more than a day or two, the mind starts to wonder….

Is this a flare? Are these symptoms going to go back to “normal?” Is there something more serious going on?

Pain is a hard thing to talk about and understand because everyone has a different relationship with pain, everyone’s “scale” is their own – my 6 could be your 9 for example – and you can’t really know what anyone else’s is unless you’re living it. My pain has been a totally new phenomenon the last couple weeks, my body is searing, my head is killing me, it’s just relentless. This pain is different from my “normal” pain, though, so it’s kind of hard to compare them severity wise, it’s hard to simplify it to a word like “throbbing, stabbing, burning, etc.” or a number 1-10 – I’m in severe pain and discomfort all over my body and it won’t give me a break — I wish that were enough to figure out a way to help, right?

“What concerns me the most is the unknown….it is just too overwhelming to think about…”

When my symptoms cause me to be even more “disabled” than normal, when I can’t get up or out of the house for a week or more, I’m hardly able to be around others because of the pain and stimulation, and I’m sleeping excessively or unable to sleep at all, it can be hard to find motivation, hard to force yourself to get up and get going, doing something as simple as shower or change into fresh pjs…

“No one really explained to me the depth or the magnitude of that diagnosis, no one explained how serious and life changing this chronic illness can be….”

There are so many unknowns with chronic illnesses, and most of us learn all about that through personal experiences, not from doctors or even google doctor! Living with conditions that even doctors don’t know enough about can be scary, all of a sudden everything you know is just swept out from underneath you, you’re left with so little understanding and no control over your own body, your own life. This is all shocking, it’s devastating, and you have got to find a way to embrace it, conquer it, and grow right along side it, otherwise, it will break you through and through, not only physically, but mentally and emotionally, mind, body, and soul.