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.

Chronic Fatigue Battles Adrenaline

So I am gonna go out on a limb here – I feel like it is probably safe to say that we have all heard or said the phrase, “I’m too tired to sleep,” right?

If you have not heard it or you don’t know what the heck it means, just keep reading and I think you’ll understand by the end of my post! If you don’t, feel free to ask 🙂

One of the worst, but most commonly understood struggles that comes with Chronic Fatigue Syndrome and Dysautonomia/POTS is when you wake up from a “solid” nights sleep and you still feel exhausted. You have a full day ahead of you with no energy? I mean, does anyone else feel like you have energy when you don’t need it but are lacking when you need it most?

Chronic fatigue is a really difficult condition to live with. It almost always shows itself as daytime fatigue – chronic fatigue, duh right? Okay, but that absolutely does not mean you are guaranteed a solids night sleep just because you are exhausted, right? Duh! You can have chronic fatigue and sleep all day and night and still be physically and mentally exhausted. You can sleep all day and be awake all night, and not by choice, not because you’re out partying or staying up watching movies and eating ice cream, but laying bed in the dark, exhausted and trying to sleep…

Fifth grade. I was in fifth grade when my insomnia came to life, so I’m a pro by now. I also have hypersomnia, something most haven’t heard of but essentially, I’m exhausted all the time and require regular rest, often times a nap or two throughout the day, & on my bad days, I am sleeping more than I’m awake. What really complicates things for me is the hypersensitivities, adrenaline rushes and narcoleptic spells.

Majority of the time I am extremely fatigued, mind and body, but there are times when I am feeling such exhaustion paired with severe pain and whether it be due to pain, fatigue, or medication, I slip into an adrenaline rush that takes me from 0-100 in the snap of your fingers. These adrenaline rushes most often hit when I’m in a state of physical and mental fatigue & exhaustion and are in no way healthy, pure energy –  it does not come after a good nights sleep or a killer cat nap, it doesn’t occur when I have plans made and am looking forward to that, it is a surge of adrenaline that hits at any time, lasts who knows how long and sometimes, for what feels like a minutes time, masks my exertion, distracts from the pain, and allows me to have a little, tiny taste of the energetic, alert, and active person I was before I got so sick.

You know those anxiety driven dreams we have about showing up naked to school or tripping and falling in front of a new crush? Well, in the life of a spoonie, those dreams come true! I have had more than my share of awkward hangout happenstance, with both old friends and new friends, most of the latter never having asked to hang out again. I’ve fallen asleep at a bar, in someone’s car, had to take IV meds plenty of times, plus just telling people about it all is always kinda awkward since people don’t know how to react, but basically every “get to know you” question leaves me with a blank if I am trying to avoid talking about my health situation, so it’s better to be up front about it than to try and make things up. I have yet to try to go on an actual date with a guy I might like since getting so sick, but if it’s anything like making new friends, I think I will hold off for awhile on that.

I am often able to be up and about and even get more done during one of these rushes; I definitely communicate more, sometimes talking fast and nonstop, rambling on about who knows what and driving my family crazy, which can be a hint I am having one. Though annoying, I think my parents sometimes enjoy my less than legit bursts of energy b/c I am more like my pre-illness self when I’m hyped up, so yes, we know they aren’t “normal” energy but what about me is normal? 

The challenging thing about this is that these rushes can last 30 minutes or 3 hours, but once it’s over, it’s over and I crash HARD and FAST. When I go down, I go down, and depending on what I used that “functional time” for, I often require a day or two of recovery time. Usually, though, it is so worth it.

That said, I’m thankful to be having less and less narcotic episodes – I am almost 6 months “clean,” aka no longer falling asleep standing up or mid sentence. I have found a couple medications and lifestyle routines that help allow me some sense of freedom or independence since I’m not being babysat 24/7 – I have plenty of photos of myself sleeping in different locations thanks to my family members who like to send them to one another. I have my little tricks for revitalizing and also know what symptoms to look out for and when it’s time to cut a social visit off before having it spiral into “no second hangout” zone. I’m ready to go.

Being sick for so long and going through so many surgeries, procedures, tubes and lines and changes in my body I just don’t have a great self confidence, I’m uncomfortable in my body physically and mentally, it doesn’t feel like MY body. I was a fit athlete, a healthy eater, I spent hours at the gym every day before I got sick, and now I have so little control over my body and it’s not easy. I have to remind myself that I am worthy and able, that I enjoy every outing I say yes to, that meeting new people has been fun, even if, for whatever reason, we only hang out once.

The world can be an intimidating place when you are isolated from it for so long. It’s not easy to navigate as a medically unique introvert who leads a very unusual life, but if you just look past that and into who I am, I’m really not any different. I may have a unique perspective on things and a pretty open schedule, but that’s about it 😉 Oh, and I won’t eat your left overs, heck, I’ll cook for you and still not eat your left overs 🙂 Who can beat that?

I want so badly to be part of the real world, but my body is fighting so hard every step of the way, almost as if it has a mind of its own and wants me all to itself. It’s an every day battle, all I want is for my mind and body to be one, to feel like one, to function like one, to be a full person, a whole woman again.

So even those short periods of relief from pain and the unpredictable, short-lived bursts of adrenaline have the ability to give me a taste of the world, a taste of life, a taste of ME. Not sick me, not poor Rachel, not anything aside from just being ME. It reminds me that there is a life out there that I am fighting for, that my life outside of illness is worth fighting for…

I WILL find my way back to being just Rachel.

Until then,

xoxo

Pig With a Purpose: The True Value of Pocket Change


One of my favorite and earliest childhood memories is how my dad would come home from work every day and empty his pocket change into this big, clear jar on his dresser. Slowly, that jar would fill up &  and when it started to get near empty-ing time (hardly ever did we wait till it was actually FULL), my sisters and I would add in any change from our (sad) little piggy banks and the fun began! 

For awhile we put the coins into wrappers, we learned to sort them, count them, and break them up into equal piles once they were sorted by coin type, it was a fun learning task, a fun thing we did together. After sorting we would all go to the bank and get cash. Later on, though, we found a magical new way to do things…

Suddenly we could pour the change into the AMAZING coin eating machine! This magical being somehow counted our coins and spit out a receipt that dad gave to the bank tellers and in return, they gave us… CASH!! WOOHOO! 

My dad would give each of us girls part of the pot – sometimes it was more, sometimes less. Sometimes more pennies, sometimes more quarters. Either way, we each got some money and that was so exciting. But we would also talk about how some people don’t have as much as we do, some kids don’t ever get $5,$10,$20, they don’t even get new toys or special ice cream treats or in the worst situation we could imagine the kids didn’t even have 3 meals a day or a house with enough rooms for everyone, enough beds, or heat during the winter.

My dad often bought groceries for families in need, spent time at school checking in with the kids who lacked a healthy support system at home, and he was available around the clock, 24/7 for the staff and families that worked/attended the school where he was principal. He is truly a beloved pillar in our community. I was, and still am, always so proud of him and all he does for others; he is a true inspiration. 

So even though we wanted the money for ourselves, we learned how to be empathetic and we experienced first hand that it is a HUGE GIFT to be able to GIVE. I am so thankful to have two parents who instilled this in us just by being them, just by showing  it in their day to day actions and words. They never ask for more, never complain or want, they give all they can and sometimes maybe more than that. 

I can only hope that I will be able to do so much good for others with no underlying goal for approval or recognition, simply b/c we are inspired and driven to do so. 

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If you and/or your children have a piggy bank that is awesome, if you do not have one but would like to start one, I absolutely encourage you to do so. Whether you donate or keep the funds to yourself it is a fabulous way for kids to learn about money, learn about money management or how to spend some save some, or how to be generous and donate!

If you want to donate, I can recommend a fabulous cause 😉

If your child would be interested in helping create a package for a young newbie tubie around their age they can sponsor a Newbie Tubie Care Package!

You can do this through a monetary donation or you can purchase the items to put together a package for a specific tubie based on their age & interests!

We have online wishlists via Etsy & Amazon – book wishlists, button buddy wishlists (purchase an animal for me to create a button buddy – animal with matching feeding tube), tubie essentials on Etsy, and then we have shopping guides to tell you what we include in each package, that way you have a guide to follow as you shop in person or online!

It’s an incredible gift and it means so much to our tubies, young or older, to know someone put these items together specially for them! It’s also a great experience for gift GIVER. Learning early on how great it feels to GIVE is an invaluable lesson that no amount of rolled up pennies, or even quarters, could buy, it is a “live it to learn it lesson.”

We have lots of young children & young adult tubies (mostly ranging from ages 0-36, but also older tubies) so sponsoring NewbieTubies of any age (child or adult) is welcome and SO meaningful, truly SO appreciated! You can make anonymous donations, sponsor anonymously, or you can send a card with your info so that the tubie you sponsored can get in touch if they want to do so!

I will link our wishlists and provide contact info so you can let us know if you have any questions or want to get involved in any way aside from making a donation.

Thanks for reading and share if you can! 

ETSY MUST HAVES: 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 : 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

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

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

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

Mindful Impact

Mindfulness. It is just amazing how big of an impact our thoughts can have on our bodies, on our ability to heal. It’s important that you fill your mind with optimistic or positive, healthy thoughts and your life with all of the things that have always brought you joy, all of your hobbies, and the people who put a smile on your face.

Today’s technologies allow for incredible connections; there is a huge online presence of “spoonies” (as we call ourselves) all over instagram and facebook, both individual pages and group pages! This resource is a HUGE gift to those of us who suffer from severe illnesses that leave us homebound or bed bound with little to no social interaction, but there are cons to this as well.

When you surround yourself with individuals who are sick, and you are sick and have been for a long time, it begins to feel normal. You start to forget what it feels like to be healthy, to be a functional, productive person. When you start to feel that way you know it’s time to reevaluate your perspective, remind yourself of what makes you feel like YOU. Not sick you, not healthy you, but YOU.

Be mindful, know your limits physically and mentally. Will all of these posts from other sick chicks –  some of them trending towards competitive over who is worse off, some who seem to thrive off of the attention from being sick – make you focus too much on the sickness? Does life revolve around illness? Because it doesn’t have to; no matter how sick you are, you are more than your illness.

There’s a lot more to mindfulness than this, but it’s a start. I encourage you all to focus not on your illnesses, not on symptoms and treatments and bad doctor visits, not of scary unknowns and dooming diagnoses, but on all of the aspects of your life that were there before illnesses, that exist independently from illness, that bring you simple pleasure, joy, distraction, love. Positivity. Light.

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.

 

Medical Madness: Survival of the Introvert

I’ve always been a bit of an introvert, my parents often tell me that when I was young, my teachers said I hardly spoke a word, I was polite and hardworking, but quiet as a mouse, which my parents thought was odd since I often talked a lot at home J I’m shy and often have trouble making friends, I have always hated confrontation or having people be upset with me. I worry about running late or being in the wrong place at the wrong time… I’ve got a lot of thoughts and opinions and knowledge, but being introverted and having trouble sticking up for myself in tense or questionable situations, it can be a major downfall when you’re living like I do.

Getting sick at such a young age with conditions that so many doctors don’t even know about let alone know how to treat. Since I was young and still living at home, my parents were always with me at doctors appointments – still are today J — and they were able to help me express things fully and ask all of the questions I needed to, ask for help with whatever needed more attention, but I still often got overwhelmed.

Being sick so long I’ve begun running my doctors into retirement, and of course with that comes the need to begin the draining search for new doctors, a task that brings difficulties in many ways. You’d think that after almost 8 years I would be able to do this on my own, to handle doctors and keep focused and calm and get everything out of it that I need, but that’s just not the case. You never know what you’re walking into with new doctors; each has their own protocols for testing and treatments, they believe in different approaches, and you have to explain your history in detail, which gets longer each time.

There are so many biases against girls like me with “invisible illnesses” simply because of my age, gender, and appearance, and the worst part is that those biases and judgments don’t just come from stupid high school kids or young adults, they come from doctors, from insurance, from pharmacies, from all of those who are supposed to be the ones making my life, making my body at least feel a bit more comfortable, a bit more active, a bit more NORMAL.

After a few bad experiences with doctors and nurses and hospitalists, some being members of my own care team, the medical professionals who hold my life in their hands, and that kind of brutal betrayal can lead patients like myself to extreme anxieties and even medical PTSD, which makes finding new doctors a terrible thought, a stressful time for me, and on top of that, I have to be brave enough to get through these appointments feeling like I’m in good hands.

Doctors are supposed to “do no harm,” but that concept is flawed and misinterpreted sometimes; “do no harm” isn’t a pledge meant just to protect us from doctors intentionally causing harm, doing things to make us sick or cause us pain, etc., it means do all you can to help your patients no matter who they are and what they have. There’s so much that happens behind the scenes of the medical system, doctors with prejudices who feel they have a right to be rude and judgmental and negligent when we know something is going on and we are asking for help. Negligence is a crime just as serious as purposeful, physical harm.

Why do you get to decide what I’m feeling, what the symptoms or side effects can or cannot be based on a decade old case study instead of putting trust into the patients, the ones living this, the ones suffering every day while the professionals get to wash their hands and go home without another thought of how their actions or lack there of are affecting us. I may not be a medical professional, but I am definitely a chronic illness expert, and if doctors could truly understand that, we could work together, creating trust and mutual respect.

A wise woman once told me that I need to remember that doctors work for patients. I think doctors forget that and take advantage of their position and their capabilities, the things that only they can do or get their hands on. We need doctors, we need the resources they can give us, but they need us, too, and they need to keep in mind that those of us with chronic illnesses aren’t your average patient, and we know our stuff.  No one knows chronic illnesses better than the patients themselves.

Since there are no options for spoonies to join the medical field based on our personal knowledge and research, it would be incredibly beneficial if our doctors and insurance agencies and dieticians, pharmacists, etc. would take us seriously and use our advice, consult with us more so than just making the decision and saying that’s that.

We do so much of the work, so much of the research, and all of the first hand experience, yet we still rely on the “professionals” who are making these decisions without listening to the answers we are offering.

Adventures of Mummy & Her Little Tubie

I’m excited to share a post written by one of our Newbie Tubie Mamas who is the mama of a little tubie and agreed to share a bit of her journey with us! This is a great opportunity to read a bit about raising a tubie from the perspective of the mother…

“There were times I’d sit and wonder how the hell we were going to get through this, how can we live like this forever not being able to feed our baby who’s starving and also failing to thrive anyway so needs every bit of milk he can get.

Our little man is now 8 months and has all of his nutrition via a feeding tube. Some days your baby’s screaming for milk and you can’t feed him because you can’t get the right aspirate – this could take us hours. It does get easier I promise!

I’m very lucky my husband is amazing with our children. He’s definitely the more practical thinker and I go into full research mode and sit and think what if. I have managed to tone down the googling – my husband made me promise I’d only google it if the doctor had spoken about it or it was in one of his reports and that really does help. Your then looking at specific information rather than a whole load of case stories of children who have completely different medical histories. I do find that being prepared helps my mental health, but only if I’m preparing for the real thing, not something from google that ends up being way far off from what’s really going on.

It also helps that he’s a very hands on Dad so I know when I’m in hospital with our youngest that the others are safe and happy at home with their Dad who also manages to keep the house going while I’m away. They spend lots of time visiting us because at the moment they’d rather be with us at the hospital but when the time comes that they don’t want to do that anymore we will be respectful of this and put other plans in place.

Our children have been amazing, they find it really tough and it’s so important to remember that this isn’t easy on them, either. They’re young, but they see the complexity, they see when we are upset, they want to know, so we tell them what’s happening but also try and keep their lives as normal as you can. We try and make sure they get to all their clubs, they have friends for tea or we get them on days out as we would have done before.

Siblings are a great gift to our tubie, but we have to make sure that each child feels loved, appreciated, and individually important to us and to everyone. Each one makes a huge difference, is an inspiration, a source of strength and light and joy.

During feeds it can be difficult to pick your baby up without messing up the pump, kinking the tubing, or making your baby uncomfortable from the feeds, and as caretakers, moms especially, all you want to do is hold that sweet baby! There are often extra steps when doing these basic, instinctual habits, and when you’re a parents, that can be extremely frustrating and disheartening. Eventually, the medical supplies falling out of all of your closets and the tasks that come with tubes and chronic illnesses become part of your daily routines, it all just becomes second nature – scary thought, right?

It’s all about finding the right mindset, but you first have to almost grieve the life you thought you were going to have with your new baby. I cried for hours that I would loose that bond by holding him to feed him; I can assure you I was worrying over nothing our bond is stronger than ever! We still get plenty of cuddle time and when he’s feeding I’ll often sit next to his cot and hold his hand, play peekaboo or tickle him. There are lots of opportunities for bonding you just have to look for them.

I woke up one day and realized this was our life and we’ve got two choices we get on with it, build our little man up and hope one day he stops aspirating or we sit and sulk about it which gets you absolutely nowhere! Life doesn’t stop for a feeding tube, feeding tubes allow life to get going again, it allows children to BE children, it is just another way to feed your little one.”

-Hayley Smith

If you have any interest in guest posting, I’m always happy to share different perspectives and pieces from fellow writers 🙂 Email me/contact me through the blog if you want to talk about it 🙂

 

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.