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cnlb2005
04-09-2006, 01:46 PM
:cry:
I'm a 32yr old female from MI. I'm a separated mother of 2. I have lupus and polymyositis. I've been living(suffering) with it since 1994. I'm to the point were I don't want to be around anyone who isn't like me. My friends and family just don't get it. I'm looking for someone that I can share certain things with from time to time. If they is anyone who would like to correspond please send me a private message.

I'm just looking for someone that I can understand and that can understand me.

nicole

Saysusie
04-10-2006, 04:31 PM
Hi Nicole;
Almost everyone on this forum can understand what you are feeling and dealing with, having Lupus and its many side-effects, syndromes and symptoms. We all will be more than willing to share with you, help you and provide you with the comfort of knowing that you are not alone!!
I know how lonely this illness can make you feel, especially when you are around people who do not have the disease, who do not understand the disease and who ask inane questions about the disease. In fact, we all, on this forum, have had to deal with that lonely feeling at one time or another and have had to deal with callous, unthinking and uncaring people. You will find none of that here!
Everyone here is knowledgeable (because we've all been there), sympathetic (because we've all needed it), comforting (because we've all been misunderstood), and all of our hearts are open to you.
I am sure that you will find some of what you need here. Please feel free to send me a message either in this forum or to my e-mail address.

Know that You Are Not ALone
Peace and Blessings
Saysusie

cnlb2005
04-11-2006, 08:11 AM
thanks for responding. this is the only place i can come and find people that feel like me.

i hope one day a live chat line for us will be made available, cause sometimes u need to vent right at that moment or sometimes u want to offer on the spot words of encouragement.

thanks
nicole

mamagina
04-11-2006, 09:36 PM
Hi Nicole,
I'm new to this forum, but I would be glad to be your pen pal. I am 42 and was diagnosed with Lupus when I was 17. I know exactly what your talking about. I have met a lot of people through the years who didn't understand or just didn't care. Keep your head high and know that there is a lot of people out here who can sympathize with you.
Regina

Teri C
05-16-2006, 06:11 PM
I just found out that I have polymyositis related to my lupus. Does anyone else suffer with this? What does my future hold. My legs are weak from it and I can't climb stairs, or stand up out of a chair. I just started 40 mg's of prednisone 10 days ago. I am also having a very hard time with the mood swings from the drugs. Can anyone relate to what I am going through. I am 40 this year and I don't want to go in public with my cane. I feel like an old woman and feel like I am looking like one. Thanks, Teri

Saysusie
05-17-2006, 02:27 PM
In polymyositis-dermatomyositis, the primary problem is muscle weakness due to muscle inflammation. Weakness especially affects: the hips (inability to rise from a chair or toilet seat, or to climb stairs unassisted), the shoulders (inability to lift a weight onto a high shelf or comb one's hair). Typically, there is little or no pain associated with the weakness. People with myositis also have: increased blood levels of creatine kinase (CK), a substance that leaks from injured muscle, abnormal electrical activity of muscles detected by electromyogram (EMG), muscle biopsy showing muscle cell degeneration and inflammation that is found in a muscle biopsy.
Prednisone or other cortisone-like drugs are most often recommended for the treatment of myositis, and may be used in combination with other immune-suppressing drugs. Cortisone itself, in high doses, may actually cause muscle weakness of the hips and shoulders, very similar to what occurs in myositis. But in this condition, called "steroid myopathy," the CK, EMG, and the muscle biopsy do not suggest inflammation, and recovery of strength promptly follows reduction of the cortisone dose.
A large percentage of people with lupus report having overlap symptoms.
At least 2% of all people with lupus have overlap polymyositis. It is important for you and your doctor to be aware of the symptoms that might indicate the "overlap" features, since these symptoms and abnormalities may be best managed with treatments not typically used for lupus. Fortunately, when an overlap syndrome is present, the symptoms characteristic of the other connective tissue diseases involved are usually mild and not life-threatening.
I hope this has been helpful to you

Peace and Blessings
Saysusie