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View Full Version : My sister has Lupus



TerisSissy
09-27-2009, 10:37 AM
Im here but have visited now and then to look up info and read threads to my sister. She does not have a computer or the internet so I do a lot of research and read to her on the phone. I also just ordered her some books on Lupus and had them sent to her which she got last week.

She was diagnosed this past year but thinks shes had it for a LONG TIME. 20 something years. It was a recent episode of Shingles and various other symptoms that finally caused the Dr to see Lupus as a possibility, dismissed it the first time as he thought the Shingles threw off her test, but the next go around after he saw the rash on her chest and spoke to her more she has finally been diagnosed.

I love her a lot and we talk almost daily on the phone and she reads materials from her books and I look up info and we bounce back and forth.

I got her Dr. Wallaces the Lupus Book and for the first time she said she realizes how serious her disease is and had a sort of meltdown yesterday crying. She works 2 jobs and doesnt have the internet, so she really hasnt had much time to devote to getting info.

She was given Prednisone and right away saw a turnaround. She is tired all the time, she always assumed because she worked 2 jobs. One job is babysitting but she just lays on a couch to watch the little girl when shes down. She has never liked daylight or to be out in and kept her house dark, shes worked night jobs most of her life and was always referred to as a night person (sunlight sensitivity) but she didnt know that, shes always been working at night and shops at night as Walmart is open 24 hrs in her area. So shes managed quite well considering.

These are many of the symptoms as of this past year shes experienced or associated

Shingles, no rash though but tests positive and severe internal feeling of itching in her arm/shoulder
Heavy periods, very heavy, clotting
Dry red eyes and puffy skin around her eyes (shes had this way before her diagnosis or medications)
Red rashy looking skin on her exposed chest area
Skin growths multiplying in recent years, like brown spots, moles, skin tags, shes had them removed or frozen by a dermatologist
Dental problems, she has been having that most of her life, root canals, bridges, crowns.
Fatigue - this has been constant and how we have always known her, at family events she crashes on the floor or couch and naps often.
She also has Rheumatoid Arthritis, but its not been severe but she was diagnosed with this sometime before Lupus and has found it manageable at this point.
Episodes of vertigo or a strange feeling of pressure inside her ears

When they first put her on Prednisone she began waking up in the morning, had energy, felt like a new person and literally felt like she had been asleep for years and loved how she felt. She is in her first flare now and is back in her bed, the dr has also been reducing her prednisone.

Im here to help her out, relay info and get info for her and post for her when she asks.

mountaindreamer
09-27-2009, 07:50 PM
hi terisissy,your sister is so fortunate to have you. I can tell that you really love her, and i know you are a huge help to her during this scary part of her life. This is a great place for gathering information,and i am so glad that you found us. we are here to help you and your sister.

abbasgirl
10-03-2009, 10:18 AM
I wish I could hug you in person! If I had a sister like you I'd feel tremendously blessed!

Please give your sister a hug from us and make yourselves comfortable here.

Saysusie
10-05-2009, 08:00 PM
Hello and Welcome TerisSissy:
Your sister is so fortunate to have you and I admire your devotion to her. Your sister's symptoms could, indeed, be Lupus and, like many of us, it is not unusual that she thinks she has been suffering from symptoms of Lupus for many, many years.
The fatigue is relentless and can be debilitating for many of us. Also, many of us have found that, when tapering our Prednisone, our symptoms begin to return and/or get worse. In these cases, many of us have had to up our Prednisone again, to get the symptoms under control, and then we have to remain on a maintenance dosage in order to keep the symptoms at bay. This may be why your sister feels as if she is in a Lupus flare right now. Perhaps she can speak to her doctor about increasing her Prednisone again until her symptoms are under control.
We are here to help you help your sister. I applaud you for your devotion to her and we will do all that we can to assist you. Welcome to our family!

Peace and Blessings
Namaste
Saysusie