You are right Ginny. I was scared, nervous, and frustrated and worried. The response to my disease by my family, was "that's strange", or "What is Lupus, I don't know much about it." This from my two adult daughters, and from my son I recieved silence. No comment. From my doctor, my GP, the response was, "Did you know you had Lupus?" as he looked at the results of the blood work. I had only been trying to tell him this for a number of years.
From all of you the response was so different, still is different. I don't think I would be where I am today if I had not found this forum. Researching lupus, and Sjogren's on the internet has its limits. Getting responses back from knowledgeable people is a whole other world.
There are many theories about us as a people, a psychological people. But there is one that is my favorite, it is the five levels of need of people. Abraham Maslowe created this idea of the five levels of need, and at the top of the pyramid is the self-actualization, a place that most humans do not get too.
but here at this forum there is a host of self-actualized people. And it seems to work as one entity sometimes. a group of people, enabling each other to be more than we might have been had we traveled this journey alone and without each other.
I am writing a list of things for each doctor coming up this month. the heart doctor, the rheumy, and my GP. And my first words out of my mouth is going to be, "Ok, this is what I need for you to do for me today, and here are some things i want you to do for me in the future." I want the rheumy to request the tests already done on me that shows many swollen lymph nodes around my esophagus. I spent two and half years getting tests done due to these swollen lymph nodes, searching for a cancer that did not exist. And no one ever thought about looking at them in any other way but cancer.
but I have learned on this forum that what I think matters. and it matters a lot. that I am the one who knows my body better than anyone else knows it. I have learned to trust my instincts. I had this pain under my rib cage, and when I presented this to the doctor and asked for a test to see what was causing it, they found the swollen lymph nodes. and test after test was the same swollen lymph nodes, but they never looked elsewhere, and I didn't remind them that the pain is still in the same place, with the same intensity.
Others on this forum have this same pain that I do. I can only assume that the one thing we all have in common is an auto-immune disease, and this is where the specialists need to look and explore. They need to listen to me when I speak, to really hear what I have to say.
I am going to write down on my list the things you have listed here. and I am going to read it to them when I go to see them. These are the things I need them to do for me. Ultimately doctors work for us.
I have not yet figured out in my head how a group of people could create self-actualized people. it doesn't make sense, but I believe with all my heart that it is the truth. I think we meet each other's needs, all the other needs lower on the pyramid of needs. I hope to be as good as you are someday Ginny, and others here who are most wise and know many things and what to say to each new person as they arrive. I want to be part of this group in ways that will give back what has been given to me here.
This forum does not discriminate between black, red, and white, fat or skinny, educated or uneducated. everybody is accepted and welcomed into the group. This is established the very first thing, the first interaction.
I am fortunate to have arrived here. It will take me some time to learn. i am a slow learner, but I will do it, and hopefully I will be the best I can be.
the real test is what happens when I visit the doctors. will my courage sustain me, or will i fail in some small way? Maybe. but what I don't do this time, will be added to the list for next time. We here on this forum, are certainly not going to run out of doctors visits and tests to be completed, so the opportunity will be given to me over and over til I get it right.
Thank you Ginny and everybody here.
Hester, I have the biggest grin on my face right now.
When you first came to the forum you were unsure, scared, frustrated, and worried. I "see" a new woman writing this post! You're finding that courage, and assertiveness to get things done! BRAVO!!!! I'm proud of you. The tone in your writing is different - in a good way!
Okay. You've already been given some great advice by sjkly, Stacie and Rosie. I don't have much more to offer except that it's really important to have no "chit chat". Get straight to the point with them. Your time is limited, so make the most of it. And don't let them hurry you out of the office. Make sure all your questions have been answered, and if they haven't or you don't understand. Get them to explain it to you again, in a different way. Most importantly, make the most of each visit. Milk it for all it's worth!
Good luck!! You're doing wonderfully Hester! Take it and run!
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
aspirin, multivitamin, Arthrotec , Meclazine , plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid, Amlodipine, Crestor, Lasinopril, Plavix, phenagrin, Restasis