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domanique
Regular Member


Date Joined May 2008
Total Posts : 156
   Posted 9/10/2008 9:34 PM (GMT -7)   
As I have posted previously I've been having alot of problems.  As of late the main ones beside constant tiredness and weekness have been feeling like I can't get enough air in, stabbing pains in my chest, and pain under my right rib cage and just below it.  I went to a pulmonary specialist and he put me on a steroid inhalor he did a breathing test in the office and said my breathing wasn't where it should be and ordered pulmonary function tests, nothing else, no ct scan, nothing. The thing is he doesn't want to see me back for 3 mths and they said the tests don't need to be performed untill a week before.  I feel like none of these doctors take any of this serious.  I am seeing a rhumy and she did a bunch of blood work and a urine check and said she didn't need to see me back till Oct 15th.  I called her and told her nurse about the pain I was having under my rib and she said I'll have her get back to you and that was days ago.
 
She already knew about my breathing issues and knew I was supposed to see the pulmonary dr.  I look at my 3 girls and hate this.  I feel like my life and my quality of life is a joke to these drs.  They don't seem to care or understand that I feel terrible pretty much every day.  Its scary cuz I'm afraid something bad is going to have to happen before the drs will ever take me serious.  My rhumy gave me an rx for physical theapy to do water aerobics.  I have a hard enough time doing eveything I need to do to take care of my girls.  I am overweight and she says well, maybe your pain is due to not moving enough.  I keep praying that one day I'll find the right dr and they'll finally help me.  On nights like tonight when I have a hard time breathing it scares me.  I need to be here for my kids.  What do I do?
 
 

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/11/2008 5:49 AM (GMT -7)   
Hi Domanique,

Unfortunately . . . we sometimes just have to use our best judgment. We call our doc with our concerns and they tell us what to do and when to come in. If that's not enough and you feel like your symptoms are urgent, then you need to head to the ER. We really like to avoid the ER with issues that are more appropriate for a Dr. visit . . . but sometimes we have no choice.

So sorry there is so much to deal with all at once. This all becomes more complicated when we have so little energy to deal with it all.

Honest and truly . . . our attitude toward everything can drain our energy or add a bit of energy. So if there is ever any way I can turn on some positive thinking . . . it is really my best medicine by far.

I know life is REALLY hard for you right now. . . but I hope things start improving for you soon.

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


domanique
Regular Member


Date Joined May 2008
Total Posts : 156
   Posted 9/11/2008 10:41 AM (GMT -7)   
Thanks. My main issue is the no care attitude I get from these doctors. Like my life and quality of life is not important to them. I know I'm feeling sorry for myself here. All day I try to be strong and upbeat for my family. Its when I finally get them all to bed that I need someone to talk to, so for awhile I don't have to put on this front.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/11/2008 12:21 PM (GMT -7)   
That's OK Domanique. We all come here and vent. Its a real life saver, for sure.

Sometimes, I think the doctors deal with SO many patient's poor quality of life, that they develop a filter so they don't take on the emotional stress of their patients' issues. Its a really tricky task to be a good doctor, have bed-side manner, limit the time you spend with each patient and on and on. But if your doctor is giving you none of the above, than it might be time to search for a new doctor. Its also helpful to bring in a family member or friend who really understand your situation to be an advocate for you. But, having said that, not all of us have such a person in our lives.

I'm glad you found us!!

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


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/11/2008 12:40 PM (GMT -7)   
Domanique, I am sorry about all that you are going through and that you aren't feeling very understodd or supported by your doctors. I think being in diagnosis limbo is one of the hardest places to be. I'm also overweight and so I know that it is frustrating when docs try to blame things on your weight. It can be hard to find, but if you were able to find a really good family doc or internal medicine doc who took an interest in your case , it would help. I don't know if you have any friends or family that might be able to give you the name of a really good doctor.

I am really hoping that you will get some answers before too long. Hang in there.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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domanique
Regular Member


Date Joined May 2008
Total Posts : 156
   Posted 9/11/2008 6:24 PM (GMT -7)   
Thanks for all the advice. We moved here to Indy last Sept. We came from MI, and the job market was horrible so my husband got a job here. Our entire extended family is in MI. My mom is coming to visit in Oct. and shes going to my next rhumy appt with me. That will be helpful. My husband goes sometimes but he gets so angry over the doctors it stresses me out to have him there. So usually I go alone. Because I've felt so bad since we've been here I haven't even tryed to make any friends, I feel like I can only handle what I'm handling now. Thanks again

alexsal
New Member


Date Joined Sep 2008
Total Posts : 18
   Posted 9/11/2008 8:47 PM (GMT -7)   
I hear ya on taking your husband to your appt. the only reason I take mine is cause my rhemy is almost to hours away and I can't seem to drive that far without getting totaly exhausted. I know that you feel frustrated I think when I come out of the dr's office I am sometimes more confused then before I even went in. I hope that you can find a dr that works for you since you are now in a new place. My rhemy is my savior he treats me well and actually acts like he really cares..good luck..
SYSTEMIC LUPUS,ASTHMA,DIABETES, DEPRESSION ,MIGRAINS , ANIEXTY  HEART PROBLEMS.  ALEX
 
DON'T MAKE ME APPOLIGIZE FOR WHO I AM!!!!!!!!

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