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Teresa
08-18-2006, 05:51 PM
Ok here goes. The closest rheumy is 50 miles away and an ass. On my second visit he told my husband I was a hysterical female and needed medicated (which he did with an antidepressant that kept me in bed). My husband told him things I canít repeat and we left. I called my insurance and they suggested I try a Rheumy in Sacramento at UC Davis 3 hours drive. I went to him for a year and he wouldnít diagnosis me, he said I had polyarthritis and put me on steroids. The arthritis foundation in LA suggested UCSF medical center a 4-hour drive away. I finally got diagnosed in two visits. I have been diagnosed now for over 6 years. My biggest problem is the distance. When I have a flare I have to do a phone visit, which isnít the same as face to face. For the first three years I saw them every 6 weeks. They are so busy now at their Lupus clinic that you can only be seen every 6 months. Itís a teaching hospital so each visit I see someone new then after I see my doctor who I like very much. He says I need a general practitioner to help me between visits but I canít find one who will treat lupus. I was seeing a FNP who is great but she opened her own office and my insurance wonít allow me to see her. Iíve tried to find a GP I call and make the appt. letting them know I have lupus and then in the visit the doctor will say I donít like treating Lupus patients so unless your extremely sick I wonít prescribe you anything or something similar. Then they blame everything on the lupus. This has happened 4 times now. Question how do I find a Doctor who will treat me between visits? I really miss not having a GP. Any suggestions?

Ok now part two. The drive to San Francisco is exhausting. I used to have a friend go with me but I have run out of friends, they get tired of the trip. I donít blame them because Iím tired of it. So now I take myself. I leave home at 8am, get to the clinic at 1pm (my visit is at 2pm) then I leave there and go to the lab. Iím usually heading home by 4pm and get home at 9pm. Itís a very long day for me, very hard on me. My last visit was August 1st. I following four days I couldnít do anything at all, between the increased exhaustion and the increased pain. I am too tired to dress, let alone to do anything. On the 6th I was able to do some of my usual things, but it took till the 12th before I was my tried self again. It takes me almost Ĺ a month to recover from the visits.

Itís really hard for me to understand how some of you work. With my 50-mile drive to town, 8 hrs work, 1 hr lunch, the 1hr drive home. My trip to SF is only 2 hours longer. I have a lot of admiration for those that can. I loved working, I loved my job (I was a medical assistant in a large office) and I enjoyed my patients. I really miss those days before I had to quit.

My headaches are increasing in strength and how often I have them. I have an appt with a specialist but not for two months. I have tried taking 800 mg ibuprofen sometimes it helps but mostly not. Any suggestions to hold me over till my appt?

Saysusie
08-20-2006, 07:49 AM
I am sorry that I cannot help you find a good doctor in your area..you did not state exactly where you are. Try googling "Rheumatologist in {where you live}". See what you come up with and present that to your insurance company. You may have to "Doctor-Shop" for a while until you find one that fits you.
For your headaches, when I am away from home and have forgotten my medication for my Lupus Migraines, I use "Tylenol Migraines" with lots and lots of water. It helps (it at least downgrades the migraine to a headache and I can deal with a headache!)
I, like you, have lots of respect and admiration for those who are able to continue to work with this disease. However, those of us who do not are also to be commended because we still carry on and do extraordinary things (like driving four hours to doctor's appointments and four hours back home!!) Of course you are exhausted, you have (for all intents and purposes) put in a full day's work!!
Best of Luck finding a doctor close to you for between visits!! Let us know how it works out!

Peace and Blessings
Saysusie

MARYCAIN
08-20-2006, 12:26 PM
If so, I would contact them and talk to some of their members to get doctor recommendations - You can also go the American College of Rheumatalogy website to search for rhuemies in your area. If you can't find a family practice doctor, try an internist (specialist in internal medicine) instead. They have to complete a five year residency, and may be more comfortable with lupus patients. Also, many immunologists treat lupus patients. If all else fails, go to your local health department, or find a good walk-in clinic where you can at least see a doctor face to face.

I understand what it's like to have to drive so far - I'm in a rural area - both my PCP and rhuemie are an hour's drive away, and the nearest hospital and medical lab are in the next county. One thing that helps is my rheumie has e-mail so I can leave messages. I used to drive myself until started having trouble with my vision, now I get a friend's daughter to take me. She doesn't have her own car, so is very happy to drive me in exchange for the use of my car at other times,

I'm sure the stress of your job doesn't help your lupus. I had a job that I teally loved as a litigation specialist with a law firm. unfortunately, it involved 10-12 hour days 7 days a week, tons of stress, and extended travel, sometimes overseas. I adored the job but it got harder and harder to do and I was afraid of making mistakes because my memory and concentration were so off, so I finally quit. I really miss it. Now I work part time for several of the local attorneys , doing research and investigation and writing and editing legal briefs and papers. It isn't exciting and it doesn't pay nearly as well, but I can work from home by using remote computer access. I know your job as a medical assistant is very hands-on, but is there any related job you could do from home? Billing or transcription, anything like that?

Teresa
08-21-2006, 07:34 PM
Thank you both for replying. I live in Shingletown Ca, 50 miles east of Redding CA. Way Northern Ca.

I am trying the tylenol migraines. My ins. is sending me a new providers list and I'll try your suggestions.

Thank you both so much.