Living with Gastroparesis

I’ll be updating this blog shortly as many things have happened and I’m still trying to wrap my head around them and find doctors who are qualified to make the correct diagnosis that may explain why all my organ systems seem to be affected. For now, I have updated the GP INFO page with a new introduction to the life someone with GP/CIP or any digestive disorder lives with day-to-day. It is lengthy but well worth the read if you are truly curious. It will help you try to understand but we all know that until it happens to you, complete understanding will never be possible. We, as a group, would not wish that on our worst enemy. I hope everyone is having good tummy days and are with doctors who really do care for them and do everything in their power to make them well, even if it means sending them to someone else for proper diagnosis as it might be beyond their scope of knowledge and understanding.

Good luck to all of you. I think of you often and you are all in my hearts and keep me going. You really are my inspiration for putting my story out to the world for it is by these words, patients become stronger and wiser in their disease, a disease that is so very much misunderstood and often underestimated and even mocked. We have to ban together to make ourselves heard and this is one way I think it can be done. Sharing stories helps us find ways to help ourselves in ways we never thought of before. Continue to read, research, share and post so newly diagnosed or those diagnosed for years but had no one to talk to can find peace in the knowledge that they aren’t crazy; this disease and those it cause are real and sometimes it is us, the patients, that are the only ways to help progress in the positive direction in terms of a cure or even treatment of symptoms. I hope you are all doing well and keeping your tummy troubles at bay as the summer quickly approaches. I hope you can enjoy it with family and friends without the extra burden of this and other diseases. I love you all and think of you often. Keep fighting. Our battle has not yet been won.

I have other news and a new diagnosis, one that some who have friended me on Facebook already know of, but I will explain it in greater detail here and what it all means when it isn’t so late. For now I will leave with a picture. Good night everyone. Rest well! <3

She knew I needed her most – even if I was completely knocked out after three days of no sleep thanks to the Ritalin they made me take after 9:00pm each night…She stayed by my side the whole time. Best dog in the world. My princess.

Love you always and forever,
Kirby

People do not cry because they are weak, but because they have been strong for too long.

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.