Living with Gastroparesis

Found this on the spoons page. If you don’t know what I am referring to – go here: The Spoon Theory

The following was tagged by their site and I thought it would be good for all of us, even the patients, to have a little refresher course. Please, feel free to add your own in the comments below =)

Happy Tummy weekend and try to stay away from those treats! (you know they aren’t good for you) <3

Things doctors say that aren’t helpful.

APRIL 5, 2012

We’ve all had this experience. A well-meaning (we hope) physician says something that sounds like it’s supposed to be helpful but isn’t. Sometimes the effect is to belittle our symptoms or tell us no matter how hard we’ve tried to communicate our experience, the message isn’t getting through.

*I’ll add in a comment or two here. You need to have open communication with your doctors. A doctor once told me you don’t even need to like the guy (meaning my pain specialist and as a side note, why are they all crackheads (jerks)), he simply needs to provide your medication as I don’t feel comfortable. I couldn’t disagree with this statement more. You must at least LIKE your physician or specialist to enable trust, belief and understanding that all make communication possible. If you can’t get it through your doctor’s head, no matter how many different ways you’ve tried, perhaps that doctor is not for you and you need to move on to someone who is. You’ll know when you find them and they will become an entagled part of your life of chronic illness, as you both work through it together.

To be blunt you are the customer (patient) and they are the workers (doctors) and if services they provide are not up to your reasonable standards, find someone else – it is your life, don’t let some crappy doctor belittle you into thinking you aren’t worth saving or if you are not actually sick when your heart tells you otherwise. My pediatrician, Doc Saba (yes I know I am 27 years old) I have known, still talk to and visit when I fly home (I’m talking to you Dr. Saba, if I hear you tell me out of shame, one more time of coming up to my area and not visiting, there will be words), since I was five years old (he always told me that I was going to be a doctor from the very beginning – singling me out from other other brothers and sisters…how he knew is beyond me – I would have become one but am restricted by my illness until I can grab a hold of it and keep it manageable). My gastroenterologist (Dr. David Patterson) I have known for three very wonderful, trying and terrifying years (regarding my recent hobby of collecting bacteria in my ports and body) all bundled up into one. To me they are super important. They know practically everything about me and I trust my lives with them. That is the kind of relationship you need or you will never move forward. If the doctor doesn’t respect you (trust, believe, appreciate), you need to move on; and as another side note, the doctor really has no business being in that profession anyway.

Sometimes, we as patients, can be rude, ugly, impatient and incredibly stubborn, and much of the time we have every right to be those things for far more reasons than I could possibly state here. But is it really worth it? However, it is not a one-way street and perhaps the burden is heavier on the doctors to move past that and get down to the real problem. Medicine is a study of a very complex network we call the human body; one controlled by people and these people are subject to the very things that make them human (they will make mistakes). It does go both ways for communication between patient and doctor to be successful. The patient needs to simply meet them half way.*

1. “You’re just stressed out!” This is usually said by someone who has no intention of doing anything to help with stress management. My impression is that the person saying this thinks that you can talk someone out of anxiety or worry that is likely based in painful reality.

2. “Don’t worry about it.” Closely related to number 1. Often said by a doctor who doesn’t want to answer questions. It is beyond me why doctors would want their patients to remain ignorant about their condition, but I’ve seen it.

3. “You need to lose weight.” If this is followed by reasonable advice on how to do so and an offer of support,” it is highly appropriate. More often this is said and no assistance is forthcoming. Hint to the socially inept doctors out there, saying this or something like “I can see you have a good appetite” during a pelvic exam is not only not helpful it is humiliating. (This actually happened to me when I was 18 years old.)

4. “It’s not your heart.” Often said when the doctor has no intention of helping you find out why you have chest pain. Even less helpful when said to someone who is having active chest pain that is helped but not completely relieved with nitroglycerin and has a history of heart disease. I feel great remorse that I delivered that statement many times in my early career working as a nurse on a cardiac floor. I’m sure some patients were reassured, but others may have felt despair that they were about to be sent home from the hospital (again) with no help for their symptoms.

5. “You may feel some discomfort.” If something is going to hurt, you should say so. This is the worst coming from surgeons who aren’t up front about the usual level of pain and discomfort felt either during or after an upcoming procedure.

6. “It’s going to hurt.” When said with a tone of disgust and no intention of relieving the pain. Even better when followed by, “What do you want me to do about it.”

7. “Cardiac cripple” This is not a medical term and has no descriptive value. A friend of mine says it’s a pejorative term used to describe a patient who has failed to get better despite the cardiologist’s best efforts. Having been described as such to the hospitalist by my old cardiologist (who also had a nurse inform me he didn’t care to help me with disability insurance paperwork because I have “no cardiac limitations”) I am inclined to agree.

8. “You’re going to have to do better.” Said with no instructions for how to do so or even what they are actually referring to. This hasn’t happened to me, but has happened to friends of mine.

I was walking down the road to the mailbox today and a neighbor in his car asked in a passing motion, “how are you doing, neighbor?” To this quick and loaded question I forced a fake smile and lied, “good, thanks.” Satisfied, he drove off, already busy in another train of thought consisting of errands or meetings he was trying to catch. Why ask this question when it is obvious you cannot stay around to hear the real answer? So many times I want to blurt out, “I feel like crap; my insides want to be on the outside and I sometimes wish to no longer be living.” I suppose they are not publicly acceptable answers to what should be small talk questions but when you think about it, these small talk questions are quite loaded.

Anyway, I’ve become sidetracked from what I originally meant to talk about, the Circus. My husband and I attended Alegría : Cirque du Soleil. It was purely magical. I find that what makes the circus so magical is the ability of the performers and detailed sets to bring the innocent children out of us to play in a land of dreams. A land of dreams where nothing can hurt us, where nothing bad happens and where we can be anything and everything our heart desires. Even if for a short few hours, our minds are open and free. I also think that at some point during the show, each one of us wishes to be part of the event and perhaps takes on that character in our mind to make the performance that more real. For those sick, the circus means even more for those feelings are even stronger. The circus represents a place we all fight each day to get to. One with no fear, no pain and no negativity; only acceptance and beauty in its purest form of love. I love the Circus and greatly anticipate going back for Crique du Soleil’s performance of OVO in Seattle later next year.