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Lupus/Autoimmune

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My life is falling apart after four years of pain in joints falling down fatigue joint swelling joint deterioration all over sick feeling im a totally different woman im 45 and just recently got a positive ana 1;320 homogenous so reum doctor orders more tests im so ill i dont go out anymore. Doctors treat me as if im a fake and just say take plaquinel and steriods the tests are in from the detailed tests finally dsdna ch50 etc the compliment is low im so confused i go see him monday he is not help I tell him im not living i feel dead fatigue pain headaches all over aches so many problems with joints tissues gone in thumb knee severe pain all over foggy mind dry eyes burning  and the doctors treat me as if im a pain to them please help if you can i dont know what to do next the doctors I have are not passionate or informative pain management treats me like a druggy or something also I feel like crawling in a hole but it hurts to much to sleep also no peace

Answer
Hello-
Thanks for writing in.
I'm so sorry for your suffering and the difficulty you are having getting good treatment.
By now you may have seen the doctor, as it took me a bit to get to this e mail. I hope it was a better experience than in the past.

It's a problem that there is currently no way for doctors to measure pain. So because of a few people who are drug addicts and work the system, they are suspicious of all of us. And of course if they give out too many pain medications, the FDA will come and start investigating them.

No one should have to go on for weeks and months and years on end in pain with no relief. I hope you can find someone who can properly diagnose and treat you so that you can again enjoy your life and look forward to each day, and reclaim your joy and love of life. I encourage you to get a second opinion.

And I also encourage you to pray. I don't want to push religion on this forum, so you can pray to anything- the wall, the sky, Jesus, Buddha- whomever you think will help you- and ask for what you need. And then picture those needs being met. This is how I finally got diagnosed after 2 frustrating years of going from doctor to doctor being misdiagnosed and dismissed, and not listened to. I prayed for a diagnosis. And I got one the very next day. Sounds crazy but it's true. I was desperate, and the universe, or God, or an angel stepped in an answered by plea. I will say a prayer for you right now as well, that you get what you need and are treated with kindness, understanding, compassion, and expertise.

My very best  wishes to you-
Carla

Carla Ulbrich

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer

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http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"  

Lupus

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Carla Ulbrich

Expertise

I can answer questions such as "what is lupus?" (How common is it? Is it contagious? What are the symptoms? etc.). Also, I can answer questions such as "what are the available treatments for lupus?" (both standard and alternative). Really, I'll take almost any question on lupus, though. If I can't answer it, I'll be very surprised, but I'll also go find someone who can.

Experience

I've been living with lupus (SLE) since 1992. I've had three severe bouts with it, including symptoms such as kidney failure and stroke (if you can call having a stroke a "symptom"). I have completely regained my health, though I have to be mindful to take care of myself, lest I get sick again. I use both mainstream and alternative medicine, and have tried just about everything under the sun to alleviate symptoms. A lot of it worked.

Organizations
Lupus Foundation of America Association for Applied and Therapeutic Humor Toastmasters Folk Alliance

Publications
How Can You Not Laugh at a Time Like This? (Tell Me Press, pub.) What is Laughter Lupus Sundial Newsletter

Education/Credentials
BA in music (UNC-Greensboro)

Awards and Honors
Novelty Song of the Year, Just Plain Folk Awards Winner, South Florida Folk Festival Song Competition Lupus Foundation of America Seal of Approval (for book)

Past/Present Clients
Medicaid Conference Alaska Palliative Care Conference Right at Home Health Care SePHIMA Anritsu Club Med Nursing in Practice

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