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.

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

 

 

 

 

Not Just a Patient

I am a person.

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

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

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

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

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

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

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

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

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

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