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Saysusie
05-03-2002, 09:29 PM
Since SLE is a chronic systemic disease, the best doctor is a RHEUMATOLOGIST! These doctors are internist who are qualified by additional training and experience in the diagnosis and treatment of auto-immune diseases, arthritis, musculoskeletal disorders and osteoporosis. Many types of rheumatic diseases (like SLE) are not easily identified or diagnosed. A Rheumatologist is specially trained to do the detective work necessary to discover the cause of these diseases and to start appropriate treatment.
SLE is a complex disease and will require numerous visits to the rheumatologist. They will also work with your primary physician about your diagnosis and treatment plan and may act as a manager for your disease and the way that it affects your life. Here are some tips for dealing with your doctor and your rheumatologist!
* Find a doctor and a rheumatologist who is willing to listen to your concerns and is willing to help you with them.
* Give your doctor a complete and accurate medical history.
* Be conpletely honest with your doctor and share your point of view with him/her.
* Ask for definition of terms that you do not understand. Ask for explantion of treatments, diagnosis and prognosis.
* Feel free to ask questions of the nurse, therapists, pharmacists or other members of the health care team.
* Don't feel that it is inappropriate to discuss sensitive issues (eg. sex, birth control, etc.). They are also important to your overall health.
* Discuss any changes or modifications in your treatment with your doctor before making the changes.

tinajee
12-23-2003, 02:57 AM
Thank you for that great advice! I am new to this support thing and I am so glad I finally found one. I have Lupus SLE and my doctor is in Memphis, Tenneesee. She seems to really know alot about the disease. I was really impressed by the fact that she does not just sit back and let her patientes hurt. She is not afraid of giving pain meds where they are truly needed. She has me on Lotab because my pain fator is high becase she can't seem to get me in remission. I take Plaquenil, Leucovorin Calcium,Folic Acid,Quinine Sulfate.Methotrexate,and Predisone. So you can see I have a pretty bad case of it. Any suggestioms on how to mentally cope with all this? I have two daughters and a husband. Plus on top of all this we own a grocery store. Thanks

Saysusie
12-26-2003, 12:33 AM
Hi Tinajee and Welcome to our Forum :lol:

You are carrying quite a load on top of having LUPUS. From your medications, you are also suffering from a lot of symptoms due to your disease...and you are running your own business!!! Wow!!!
When do you get to rest?? How do you alleviate stress??? Stress can be the major factor in your inability to achieve remission. Since your physician is so knoweldgeable about the disease, I am surprised that she has not explored the option of obtaining therapy to help you deal with your stress and the burdens that you are under. Discuss this with her.
In the meantime, do try to find a way to eliminate some of your stressors, to take productive rest periods and to take care of your emotional needs. You may have to work out some sort of plan with your family and with your business in order to assist you in managing your disease and achieving remission. Most of us have found that we have had to change out lifestyle in order to live a relatively normal life with this disease.
I wish you all of the best!
Peace and BLessings
Saysusie

tinajee
12-26-2003, 11:08 PM
Thank you for your reply and advice. Yes I do have a huge load on me but the great thing is I have a wonderful husband that helps as much as possible. Right now I am off work due to my kidney trouble. Since my doctor found the blood and protein in my urine I was referred to a kidney specialist. I ahve to go see him in January. I do have a great deal of stress on me and the depression is very hard at times. How long have you had lupus and what kind if you do not mind me asking? It is so wonderful to have someone who is going through the same thing as me to talk to. You ahve really made my day by replying to my post. I ahve been looking for some support groups but had little or no luck. So I am very happy to have found your board. My Mother is really stressed at this point because I am only 32 and she is worried about how long I will live with this disease. Mainly because my symptons are so bad already. Well thanks agin and I will stay in touch and please do the same. By the way do you have any ideas on how to manage the pain factor of lupus?

Saysusie
12-31-2003, 11:07 AM
Hi Tinajee;
The best thing that I do for my pain is to exercise (believe it or not!). I try to do at least 30 minutes of aerobic exercise each day and then I do yoga for stretching and relaxation. Afterwards, I take a hot shower and then at least 1 hour of rest. A heating pad has become my best friend :-)
From your list of medications, you are already taking NSAIDs for pain. Are they allieving any of your pain???
As I mentioned earlier, you may find that you have to adjust your life in order to manage you disease. I know that the schedule that I am on may not fit everyone, especially you since you are so busy. But, it might be to your benefit to try to make some changes in your schedule so that you can take the time to care for and manage your disease!!!
You are very lucky to have a loved-one who is supportive and helpful. That, in and of itself, is a blessing :lol:
Take Care Of Yourself and let me know how you are doing!
Saysusie

tinajee
12-31-2003, 09:12 PM
Hey there I am doing about the same. My medications for my lupus are still not working at this point and I am really getting frustrated. I think my doctor is going to have to start the IV chemo when I go back to her on the seventh. We are running out of other meds to try to get me in remission. This is the first New Years Eve I ahve not been able to get out and do anything thanks to being ill. So me and my daughters are having a little party here at home. My husband is getting depressed also because he can not get out and do the things he use to because of me. I feel really bad for that but I can not help it. Well I guess we will see how things go next week. I will let you know. Take Care

Norolhuda Md Desa
02-18-2004, 09:23 AM
i wish i could get longgggggggggg leave so that i can have enough rest...and spend more time wit my family..and i can stop thinking the stressful and unfinished :? job in school....i wish for that...