What do I need from the doctor?

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Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/5/2008 2:35 PM (GMT -7)   
Somebody talked about this subject the other day, and those few words turned me around to about face.  Just the question put things in a whole new perspective.  I had been going to the doctor thinking thoughts like, what does he want to hear, what does he need to hear, what does he want me to do?
 
But the real question is "what do I need the doctor to do for me?" and it gave the "thing" that I needed to turn my doctor visits around.  It is not just courage, or stamina, or assertiveness...........It is like an ability that I did not have before, and this one question did it for me.
 
I will still take a long time to talk in medical terms probably, but I visit here everyday, and it is the language I hear all of you using, so I will pick up on it eventually.
 
Thanks again to all of you
Hester
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  


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 10/5/2008 2:41 PM (GMT -7)   
Hi Hester, for me... I needed a doctor to "listen" to me, take me serious and get to the bottom of my symptoms and not mask them with pain meds. I also wanted a good treatment plan, meds to slow things down, etc.

This is a great place and you will pick up on the terminology. We are glad you found us, you have so much to offer others here. Take care
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Darvocet (as needed) and magic mouthwash (for mouth sores)


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 10/5/2008 4:34 PM (GMT -7)   
When I see my doc she always starts out by asking questions about how I'm doing and about the meds I am on and how they are working.
At the end of the appointment she always asks "What else would you like me to do for you today?" Every single appointment-and she listens to my answer.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/5/2008 5:41 PM (GMT -7)   
(((((((((( Hester ))))))))))))

YEAH!!!!

I can't tell you how many times I've posted those words!! YES! Include this simple step your notes before you go to the doctor!! "What I want the doctor to do for me today" YES!!!

I'm so glad that was helpful to you!! And YES this forum is awesome! I've learned so much here . . . but mostly its so great visiting with others who understand.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 10/5/2008 7:53 PM (GMT -7)   
Hester, I have the biggest grin on my face right now. smilewinkgrin
 
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!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/6/2008 6:14 AM (GMT -7)   

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

ginny said...
Hester, I have the biggest grin on my face right now. smilewinkgrin
 
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!
 
Ginny


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  


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 10/6/2008 2:38 PM (GMT -7)   
Actually, Hester you may have just helped me out by saying what you were planning to do for each doctor's visit. I am seeing 2 new doctors in the next week or two and I really need to make this work because I need my team of doctors finalized instead of constantly fluctuating. What I mean is I need a permanent pcp and neurologist. I always end up seeing a doctor 3 or 4 times before I realize they are worthless to me. If I take a list of I need you to do this for me maybe I can avoid that and see immediately if they are worth my time and money. I will be making my own list tonight. I would have forgotten had I not just come accross your post. Thank you.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/7/2008 4:54 AM (GMT -7)   

You are quite welcome.  Let us know about the new doctors and how they turn out to be.  It helps me to know of other people's experience with doctors.  It helps me to be more courageous, and actually say what I plan to say when I get there.

I am hoping that my blood work will be back about the stuff Ginny told me to do.  the sticky blood because of Lupus. (need to learn the medical words) I go to the heart doctor tomorrow for more tests, and then the 22nd I go for consultation.  Hopefully I will not have to see the heart doctor for a year after this one last thing.

Hester


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  


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 10/7/2008 8:26 AM (GMT -7)   
H Hester,
 
Well, it took me a couple of years, after my diagnosis, to be able to remember the names of things and be able to talk "doc talk".  I think what really accelerated it all was that so much was going on with me, I was forced into it!  If I didn't understand what was going on, I was in trouble.
 
Can you tell me more about this "self actualization"?  Do you have a website link I could visit to learn more?  It sounds ineresting!  I agree that this is a very special place to receive and give support. Especially when you think about how none of us can put a face to each name, yet we get to know one another so well.  And you're right.  There is no discrimination here. We are all one! Human beings. Period, end of story.  It's wonderful!
 
Your consult is in a couple of weeks eh?  Between now and then, grill us for info! Anything you have questions about, run it past us.  We might as well load you up as much as possible!
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/7/2008 12:30 PM (GMT -7)   

I will try to remember to do this.  drill you for answers to questions.  Have to think about it some.  Never thought about asking you all questions about what to say or ask.  I have to run out now and take my grandson to the bank, and to the office where he works.  the website below is a quick look for the hierarchy of needs.  will try to find a better one when I get back home.  I did an independent study on Maslow's work when I was in college.  He is wonderful to me.

Hester

http://honolulu.hawaii.edu/intranet/committees/FacDevCom/guidebk/teachtip/maslow.htm

ginny said...
H Hester,
 
Well, it took me a couple of years, after my diagnosis, to be able to remember the names of things and be able to talk "doc talk".  I think what really accelerated it all was that so much was going on with me, I was forced into it!  If I didn't understand what was going on, I was in trouble.
 
Can you tell me more about this "self actualization"?  Do you have a website link I could visit to learn more?  It sounds ineresting!  I agree that this is a very special place to receive and give support. Especially when you think about how none of us can put a face to each name, yet we get to know one another so well.  And you're right.  There is no discrimination here. We are all one! Human beings. Period, end of story.  It's wonderful!
 
Your consult is in a couple of weeks eh?  Between now and then, grill us for info! Anything you have questions about, run it past us.  We might as well load you up as much as possible!
 
 


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  

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