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 Illness Dictionary

New to the spoonie life? Are you the patient or a loved one/caretaker/friend trying to support a spoonie? We have a lot of chronic illness “lingo” that can be confusing to the “real world,” so I decided to create this list to help get some of these out there and easy to find 🙂 This list contains many of the common words and acronyms you will come across  but I’m sure I’m missing something! If you have other words/acronyms I missed, comment and I’ll add them in! I plan to do so as things pop into my mind, as well 🙂

And off we go!

  1. “Spoonie”- chronic illness patient; a term based on @TheSpoonTheory that aims to explain the level of fatigue we face as well as what simple, daily tasks can take so much energy from a “spoonie.”
  2. “Tubie” – a term used in the chronic illness world to talk about individuals who are tube fed; not an insult, we use it about ourselves and one another all the time.
  3. “Stoma” – the tube site, the area on your outer abdomen where the tube enters, and is used to keep it clean and comfortable as much as possible.
  4. “Feeds” – formula that goes through the feeding tube to sustain and nourish patients; “Time for feeds” is like “Time for supper!” except a lot less fun.
  5. Tubie Pads: similar to gauze but much cuter, used to help keep the tube site clean, healthy, and CUTE 😉

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Tubie pads donated by some of our VIP donors : @newbietubies @turkeytotcustoms @HomemadeTubieHappiness @DorkyLittleEtsyStore

  1. “Vent” – if you have a feeding tube that is in your stomach (gtube/gjtube/NG tube) you can “vent” it if you are nauseous or have air stuck in your gut (which doesn’t move). It is often done with a drain bag for gravity or a syringe for suction, which requires more caution – ick!
  2. A cental line ( hickman or port, picc line) – essentially a long term IV that is placed into a large blood vessel near the center of the body most often through your chest and ending at the heart; used for IV treatments like chemo or IVIG, TPN, medications, IV hydration, etc.
  3. Brain fog – cognitive dysfunction that comes with conditions like dysautonomia, ehlers danlos syndrome, fibromyalgia, etc. and causes severe problems with word finding, on the spot thought processing, short term memory problems and sometimes long term as well, lack of mental clarity and trouble holding conversations, etc. // People often say they feel that way too, that it’s normal when you’re tired, it happens as you age, etc., but if you felt the fog we feel as patients, you’d be very glad your fog is not what we experience.
  4. Motility (GI) – movement of the digestive system and its ability to move anything in there along with it throughout the GI tract. When there isn’t proper movement, undesirable symptoms can come up and you can be at risk for conditions like gastroparesis. Gastroenterologists who specialize in these conditions are called “motility specialists.”
  5. Flip/flipped – if you have a GJ tube  you can experience a “flipped” tube, this is when the j-arm comes up from the intestine and into the stomach, where it doesn’t belong. To fix this you have to have it rewired in IR.
  6. Tubie Friend” – a stuffed animal or a doll with medical devices to match your own, so feeding tubes, central lines, oxygen mask, etc.; these are incredibly comforting and meaningful for all ages.
  7. “Button tube” – low profile feeding tubes have an extension that can be removed, leaving only the “button” when you’re not using it! The other surgical tubes don’t have that option, and we usually call them “dangler” tubes or catheter tubes.26610760_10211000346221389_75216378_o.jpg

13. “leaker” – individuals with cerebrospinal fluid leaks

14. Zebra – a zebra is representative of rare diseases, sometimes patients refer to themselves and others with such conditions as zebras themselves

Acronyms you may come across:

NTCP: Newbie Tubie Care Packages

NP: Nurse Practitioner

PCP: Primary Care Physician

GP: Gastroparesis

EDS: Ehlers Danols Syndrome

POTS: Postural Orthostatic Tachycardia Syndrome; a type of Dysautonomia

MCAS: Mast Cell Activation Syndrome

NPO: nothing by mouth, long term or short term, often just 24hrs/overnight before surgery or certain procedures such as tube replacements, or even for fasting blood work

TPN: total parenteral nutrition, nourishment coming straight from an IV bag into your central line in order to stay nourished; can be short term or long term and is used as a last resort for dysmotility/gastroparesis patients who can no longer tolerate oral intake or feeds into the jejunum.

 

Types of Tubes:

GJTube: through your stomach and into the intestines; has access to both stomch and intestines

Jtube: a feeding tube that enters straight into the intestine; most complex and serious surgery out of the 3 surgical options, mostly used for those of us with severe dysmotility not just in the stomach, but also through the lower GI tract – small and large intestines/colon/etc. – and hence cannot keep the j-arm of a GJ tube “down” due to the lack of movement/pull.

Gtube: a tube through the abdomen and into the stomach directly, no lower access

NJ/NG: tubes going through the nose instead of the gut; usually used for short-terTm help for babies, individuals hospitalized, etc. or trials for feeds before surgery for G/J/GJ surgery.

 

*If you have any suggestions for words/phrases I should add, let me know- I’m always happy to have opinions from others 🙂 *

xoxo

Rachel

 

 

 

 

To Those Who Hold My Quality of Life in Their Hands

To Whom it May Concern,

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

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

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

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

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

this is a life sentence for the innocent

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

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

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

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

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

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