Here are the questions:
1.What do you experience from this nervous system disorder that you might like to share with students studying lupus?
2.Can you put into your own words what it is like to have lupus.
3.Have you had any special hobbies or special interests that you had to drop or change due to lupus? If so, what are they?
4.Describe an incident dealing with lupus that really made you think about having lupus.
5.Who or what has influenced the way you have dealt with lupus?
6.Has having lupus altered the way you perceive life and people in general? Has this adjustment changed the way you view daily routines?
7.Has the medical profession been able to offer relief, aid, or service in dealing with lupus? If so, how?
Please email me the answers to these questions at ravneetkaur89@yahoo.com Sorry, i wrote that lupus is a nervous system disorder, I meant to write immune system disorder. That sounds so much like an assignment i did on a breast cancer patient. I FEEL FOR YOU. Easy way is to find a lupus website, that will answer most of your questions. Then write it as though you actually interviewed a patient. Good luck. I copied and pasted your email into the "to" field. It bounced back.
Lupus is not a nervous system disorder, although the nervous system can be affected.
Lupus is a chronic, inflammatory AUTOIMMUNE disorder.
Please read about it at the link below. Hello,
Good luck w/ your project - here are my answers. Please let me know if you need any further information. I'd be glad to help.
1.What do you experience from this nervous system disorder that you might like to share with students studying lupus?
I have not heard Lupus referred to as a nervous system disorder, but it does affect the nervous system. I've experienced headaches - mostly on the right side of my head and I've had "unexplained" seizures. I also get a lot of confusion or kind of lose my track of thought. For instance, I'll walk into a room and forget what I was going in there for. Or mid sentance I can't remember what I was saying.
2.Can you put into your own words what it is like to have lupus. - Having Lupus is like being on an emotional and physical roller coaster everyday of your life. Sometimes you're going up really fast, but you have that anxious feeling because you know that you're going to come crashing down really quickly and there is no way to avoid it.
3.Have you had any special hobbies or special interests that you had to drop or change due to lupus? If so, what are they?
Yup, but the most tramatic has been running. I am a runner and love the feeling of running outside or completing a road race. I still run, but it's really hard to train for an event or even commit to a race since I could wake up that day and not be able to move w/out pain - never mind run in a race. I do my best though and try to run even when I'm not feeling that great - well, maybe more of a walking / shuffle attempt at running, but I still try. A for effort!
4.Describe an incident dealing with lupus that really made you think about having lupus.
Deciding to have children or not. Most people are able to just have a child and the biggest decision is whether they are ready mentally. Having Lupus brings up a whole world of concerns for the mother and for the infant. I'm still working out this decision and haven't fully decided either way yet, but I do think about it everyday.
5.Who or what has influenced the way you have dealt with lupus? I try to keep a positive attitude about life in general, but Lupus is a very trying disease. Finding support groups where I'm able to ask questions or just vent to people who understand what I'm feeling. I felt very alone when I was first diagnosed, but my support groups have become like an extended family to me.
6.Has having lupus altered the way you perceive life and people in general? Has this adjustment changed the way you view daily routines?
I'm very greatful for the days when I feel good. I do change my mind about how I feel about people in general though so this is a hard question for me to answer. I tend to get a little insecure when I can't do something because I'm tired or it hurts too much. I get very annoyed if anyone tries to baby me because I feel like I want to do it all myself. Sometimes I wish that people could feel what it's like to have Lupus - even for a few hours so they would know what it's like. Sometimes I view daily routines as just that and it doesn't bother me. Then there are the days when just taking a shower and getting out of the house are so completely exhausting that I doubt I'll make it through the day. That's where the positive attitude comes into play - if I tell myself I can do it then I will do it.
7.Has the medical profession been able to offer relief, aid, or service in dealing with lupus? If so, how?
My dr's have offered pain medication, anti inflammatory medication, physical therapy and other options. Right now I'm seeing a chiropractor and moving more towards the natural relief and trying to stay away from the medications. After discussing this w/ my dr. she recommended yoga, swimming and light exercises that won't cause too much stress to my bones, joints, muscles, etc.
I hope I answered all of your questions with enough information to help you w/ your project.
~Christina Hello my name is Patricia, I was diagnosed with SLE IN 1994. I will answer to the best that I can. What I have found is that many people will descibe Lupus in different ways, I never thought of it being nervous system disorder , but my experience so far is that it is a painful, tireing, and limiting disease that reduces a person quality of life extensively. And the person will evently subcome to it.
I can describe my symptoms which reoccur with every flare..My flares start out i have intense itching on my back but there is no rash so i thought it to not mean anything for awhile, my joints in my hands, wrists, ankles , knees, have swelling and pain.. I had seizures but are now under control. I was taking Dilantin but was taken of of that to eliminate that as a source or cause for the seizures or Dilantin related seizures. I had a pulmonary embolism in january 1996 treated with coumadin.doing fine since. I suffer from reoccuring Pluerisy and undiagnosed chest pain. I 've had carpal tunnel surgery on both wrist was told the the Lupus will continue to flare and the symptoms will returned and that proved to be true. I have gotten better with pain relief. I use Lidoderm patches I leave them on for four to 6 hours and that helps alot. I know that during rainy, snowy weather I have to limit my exposure to the elements. Three to four days after a change in the weather I can function better but on a limited basis. Living in Wisconsin is no treat. I found that when I have traveled to a southern states I felt much, much better. I have joint stiffness in my shoulders and limit my upper body motion. When I was first in treatment I was given very high dose of Prednisone which affected my muscles in my legs and now I have to use a power wheelchair. I become severely fatigued and weak.
I have been able to maintain my volunteer job but my illness will not allow me the ability and strength to hold a full time job.
That what I miss the most.My interests I was the chairperson to the paratransit advocacy group here in my hometown.I am still a member of that board . I was a braille transcriber, I was a phone counselor for a helpline for drug indentification. suicide attempt rescue. resource for the community.
4. Not being able to walk is the main reminder that I have Lupus which I know is not a symptom that most lupus patients have . But the weakness is very difficult to deal with.
5.I have had some good and bad doctors. Some have treated me really poorly , I believe that the definition of Lupus is not as universal and there are still some medical professionals that still think this a minor complaint that women have like her period. But the person who originally diagnosed me was my primary care physician who was an internist.
6. yes I look at life a whole lot differently. I pay attention to how my body feels and act accordingly by resting more.
7. It has been an uphill journey finding a rheumatologist that cared and i did. He listens to me and does not force me into anything. I thank God for him. I realize that rhuematologist are few a this time around the country. I lost five friends to lupus in 2003 I lookat life very differently and my own health.My pain and stiffnessis being addressed more now. |
