21 yr old african american living with lupus

Hello Superwoman!

 

I love your name!  Welcome to the forum.  I was diagnosed with lupus at the age of 26.  So pretty close to your age.  I was definitely struggling with the disease as young as about 15 or 16, but no one ever did anything to help me find out what was going on.  took a long time to get diagnosed.  I also have heart related issues, and a lot of blood issues.  Most specifically, APS, which caused me to have a stroke in 2002. 

 

We all absolutely understand the turmoil you're in.  Physically and mentally.  Dealing with a chronic disease like lupus takes a tremendous toll on our minds.  I also have troubles with anxiety, hypertension, and fatigue. The anxiety is bad some days.  I also understand how you feel about not wanting to go on with this forever.  When I go to that dark place, it's horrible. I rely on my faith, prayer, and family support to get me through the tough times.

 

How is your support network?  Do you have good support around you?  Are you working or going to school? 

 

You made a great leap into joining this forum.  We love to support each other, talk, vent, cry, rejoice!, and be friends.  I look forward to getting to know you better. 

 

((((hugs))))

Ginny

Hey Superwoman,

Many of us here may have been to that same dark place, wondering if we even want to go on even for one more day.  i know I have been there many times.  I seem to do things in cycles, and at least once a month I know I am going to go to that dark place again, and all I have to do is hold on for one more day, one more minute, and it will change.  Lupus doesn't change, how I respond to it changes.  Most of the time I am committed to not letting Lupus defeat me, but sometimes that will power just does not exist.

Talk to us when you are in the dark places if you can.  I know how hard it can be to write to other people during those dark times, but it seems here at this forum, is a safe place to vent feelings.

I can't know what it is like to be your age and sick with Lupus.  It didn't get really bad for me until I was older.  Like others here I believe that Lupus made me sick often, and I just did not know what it was.  Thanks to many good changes lupus is now easier to recognise and diagnose.

Take care Superwoman and speak when you feel you can share.  there are others on this list that are young I think, or they are the parents of young people suffering from Lupus.

APS, which caused me to have a stroke in 2002. 

Ginny could you tell me what APS is?  you had a stroke the same year that I did.;)

Hester

Hey Serina thank you for your response. In your response you stated that lupus doesnt change how I respond to it changes. When I read this I began to cry because you are so right and I thought it was beautifully said. Ive never been the type to talk about how im feeling or what im thinking I try to hold it all in and deal with everything on my own and truthfully I think this played a major factor in the onset of my lupus and it still does. I will definately take your advice and be using this site to shed light in my sometimes very dark world.

Ive never been the type to talk about how im feeling or what im thinking I try to hold it all in and deal with everything on my own and truthfully I think this played a major factor in the onset of my lupus and it still does.

I think this could be a factor in all of us.  But our holding back doesn't cause Lupus.  YOu did nothing at all to cause this disease to strike you down.

I have never been one either to talk about how I think and feel, and I still find it difficult.  But it doesn't cause Lupus, and it doesn't make Lupus worse or better.  You are not to blame for having lupus.  I do not know why Lupus attacks our bodies and mind.  and other people, "most" other people do not have Lupus.

I hope I am not sounding mean.  But when I read your post, it seemed to shout at me that you feel responsible for having Lupus.  And responsible for it continuing in your body and mind.  and this just can't be true.

Sometimes I say things and i don't really say it in the right way, so forgive me if I have done this.  It is not my intention.  Just wanted to try to alleviate some of your emotional pain caused by you blaming yourself for this disease, if this is what you are doing.

It can help us to talk about it.  Helps us to cope and not feel so alone in the world.  This forum has done this for me.  And I am gradually working up to sharing more of my own thoughts and feelings.  Talking about it may get us to a better place to accept this disease and help us to feel better emotionally.  and it can help in the sense that these people here are very educated in Lupus, and can tell us things maybe we would not have thought of, and in that way help us and our symptoms.

I hope I have not offended you in any way.

Hester

Hey Ginny.,

                  My treatment today went well although I did experience some nasuea and vomiting. Overall it wasnt as nearly bad as I thought it would be but I do feel a bit drained of energy right now. I'm scheduled for treatments once a month for six months and if I'm responding positively to them I'll start having them on a quarterly basis, so once every 3 months for 2 years. That part isnt that bad but I have to have a weekly CBC and a renal panel every 2 weeks.

                 To answer your question at one point and time I wanted to study constitutional and tort law but with everything i've experienced within the last year and a half i've come to realize money isn't everything. I now want to study juvenile justice and pursue a career in social work. No, the pay wont be as half as great but I think the satisfaction i'll get from being able to help others is well worth it. As for your husband don't get 2 upset with him when he says that. Just remember that he's trying 2 help and be thankful that you have someone by your side. I'm in constant fear that I will never find someone who is able to deal with my disorder and be there for me so know that you are lucky. Thanks for your support I truly appreciate it.  

Superwoman,

I want to add my welcome to the forum. I'm so happy that you have found this wonderful outlet because I truly believe that all of us lupies, regardless of age, need a support group to help get us through the rough times. And since lupus, as you know, is so hard to describe, this is a wonderful place where you can talk with people without having to explain anything. We all understand each other like no one else can.

If you believe that you caused your lupus, then can the rest of us respectfully disagree and suggest that perhaps you had family members in past generations who might have had lupus but were never diagnosed since hasn't been a mainstream disease until the past 50 years or so? How about the theories that it can be triggered by environmental factors -- chemicals in the products we use, dyes we put in our hair and on our nails, and who knows what is put in our food before it ends up at the grocery store. A hundred years ago people ate a healthier, more natural diet because that's what was available. If you've ever eaten out, bought meat in the grocery store, or not washed an apple as well as you should have, then you've probably put something in your body that isn't natural and healthy. Until we have more evidence of what causes lupus, I hope you'll stop punishing yourself and blaming yourself for something you most likely had no control over.

I copied something I read in the SLE Lupus Foundation website that takes this argument a little bit further:

"Lupus is estimated to affect 1 to almost 1.5 million Americans, 90 percent of whom are women.
African-American women are three times more likely to get lupus than Caucasian women and to suffer worse symptoms. According to the National Institutes of Health (NIH), as many as one in every 250 African-American women has lupus.
Latino, Asian, and Native American women have an increased incidence of lupus. In fact, lupus is twice as prevalent among Asian-American and Latino women as it is among Caucasian women."

I have a daughter your age and I guess what I would want to tell you is that you have enough on your plate to add the burden you're adding. Be kind to yourself.

Dealing with this awful disease at my age is hard enough, but to have to go through this at your age must be devastating. In addition, your disease is worse than mine. Please use this forum as a lifeline to folks who will be here for you, who will understand you, and who will always support you. I'm so glad you found us.

From one new friend to another, a great big (((((((hug))))))))

Pat

Hi Superwoman,

 

Just wondering how you're making out?  Did you get over the nausea, etc?  How are your studies going?  Lots of questions for you!!  Hehe... Just wanting to touch base and see how you're doing.

 

Blessings,

Ginny