21 yr old african american living with lupus

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Superwoman
New Member


Date Joined Sep 2008
Total Posts : 8
   Posted 9/20/2008 4:13 PM (GMT -7)   
Ive never met, talked to, or even had an online-chat with anyone my age that is plauged with lupus. I want advice from all that are affected by this disorder but i became a member because i would truly love to have the opportunity to talk to people around my age that may understand my struggle just a little better than most. I truly feel this would help me maintain my sanity. 
 
Im 21 years old and I was diagnosed with SLE in march of 2007. This disorder has been highly active since i was diagnosed and it has completly changed my life. Ive experienced life-threatning complications with my heart, lungs, and kidneys. I struggle with high-blood pressure, high-cholesterol, anxiety, depression, fatigue on a constant basis. Each day seems to present a challenge, wheather its just taking fistfuls of medication or finding the energy and motivation to get out of bed. No matter what my daily struggle is the fact still remainds that lupus now consumes my life. I once thought that everything in life happened for a reason but for the life of me i dont understand why i have been burdened with this very nasty disorder. My mind wonders and i dont know if i can go on but the worst part is sometimes i question even if i want to. cry

This has occured within the past six months:
Medical history: SLE, SLE Nephtitis (Stage III/IV), HTN, pnuemonia, pleural effusion, pericardial effusion requiring drainage (2x)
 
Surgical History: Percardiocentesis with pigtail catheter placement, renal biopsy (2X)
 
Daily Meds: Nexium(40mg), Calcium Carbonate(500mg 3x), Adalat(60mg 3x), Demadex(50mg), Plaquenil(200mg 2x), Zoloft(50mg), Spironolactone(400mg), Atacand(32mg 2x), Prednisone(80mg), Lebatalol(1000mg 2x), Clonidine(0.2mg), Plaquenil(200mg 2x), Pravachol(20mg), Zofran

Post Edited (Superwoman) : 9/21/2008 5:05:48 PM (GMT-6)


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/20/2008 5:28 PM (GMT -7)   
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
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


oldhippyrebel
Regular Member


Date Joined May 2008
Total Posts : 58
   Posted 9/20/2008 8:40 PM (GMT -7)   
Superwoman
I can' even imagine finding out when I was in my 20's, I was in my 40's and ended up getting laid off after 27 years when they moved the work out of state . By just 1 month, I managed to keep my insurance I don't know that I would have done if I hadnt had my insurance.

I've found this place to be very very supportive. Good luck
Fibro since 97, Lupus since 99, neuropathy and other nerve damage.
On to many Meds to list, Finally got a date for SSA of July 1 after to many years of fighting for a hearing.


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/21/2008 12:01 PM (GMT -7)   

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


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


Superwoman
New Member


Date Joined Sep 2008
Total Posts : 8
   Posted 9/21/2008 4:43 PM (GMT -7)   
Ginny thank you for replying to my post! To answer your questions my friends and family have been a wonderful support system thus far but I cant express to you in words how it feels to finally interact with someone who truly knows my daily fight. I know those who are around can see my daily and physical struggles but ultimately they will never understand what I go throuhgh. Unfortunately I cant work and im trying to get SSI but finding it very difficult. As far as school I was supposed to be staring Aug. 25th but unfortunately I was admitted to the hospital on Aug. 14th and wasnt discharged until Sep.11 therefore I had no choice but to drop my classes. Hopefully i'll be well enough to start the spring session but only time will tell. Im going for a cytoxin treatment in the morning and im so afraid have u ever heard of this treatment or experienced it yourself? If so what do u know about it? Once again I want to thank you and keep in touch wink
This has occured within the past six months:
Medical history: SLE, SLE Nephtitis (Stage III/IV), HTN, pnuemonia, pleural effusion, pericardial effusion requiring drainage (2x)
 
Surgical History: Percardiocentesis with pigtail catheter placement, renal biopsy (2X)
 
Daily Meds: Nexium(40mg), Calcium Carbonate(500mg 3x), Adalat(60mg 3x), Demadex(50mg), Plaquenil(200mg 2x), Zoloft(50mg), Spironolactone(400mg), Atacand(32mg 2x), Prednisone(80mg), Lebatalol(1000mg 2x), Clonidine(0.2mg), Plaquenil(200mg 2x), Pravachol(20mg), Zofran


Superwoman
New Member


Date Joined Sep 2008
Total Posts : 8
   Posted 9/21/2008 5:05 PM (GMT -7)   
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. :-)
This has occured within the past six months:
Medical history: SLE, SLE Nephtitis (Stage III/IV), HTN, pnuemonia, pleural effusion, pericardial effusion requiring drainage (2x)
 
Surgical History: Percardiocentesis with pigtail catheter placement, renal biopsy (2X)
 
Daily Meds: Nexium(40mg), Calcium Carbonate(500mg 3x), Adalat(60mg 3x), Demadex(50mg), Plaquenil(200mg 2x), Zoloft(50mg), Spironolactone(400mg), Atacand(32mg 2x), Prednisone(80mg), Lebatalol(1000mg 2x), Clonidine(0.2mg), Plaquenil(200mg 2x), Pravachol(20mg), Zofran


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/21/2008 6:16 PM (GMT -7)   
Hi Superwoman,
 
Ohhhhhh, do I ever know what you're talking about.  I also have tremendous support from my family and husband, but they will never understand what it's like to live day in and day out with this disease. The only people who understand are those who live with lupus too.  I think that is one of the hardest things to continually deal with is the lack of real understanding.  My husband says, "I understand babe".  It makes me mad.  "No, you don't understand.  Not one bit. Not even a hint."  That only sinks me into a deeper hole sometimes.  At least he isn't saying, " Suck it up!"  LOL.  
 
It took me over a year to get my disability.  I lost it in 2005 because I was finally in a remission and able to work full time at my photography business.  I'm not in remission anymore, and working is hard on me.  I dread the day I have to reapply.  I hope you finally get the break you need and start receiving your payments.  Just don't give up, keep on them!
 
I hope your schooling can get going next semeseter.  What are you planning on studying?  The spring is a good long time away.  Let's pray that your cytoxan treatments really kick in fast and you feel better!
 
I've never had any chemo treatments.  But they are very affective from what I've learned. Don't be afraid. They'll look after you well and answer your questions.  Please touch base with us and let us know how it went, okay?  We can help you get through this. 
 
You might want to start a new topic and make the title in regards to your cytoxan treatment.  Other members who have had them can answer you faster that way.
 
Good luck tomorrow!!
Ginny 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/22/2008 7:37 AM (GMT -7)   
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
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/22/2008 7:58 AM (GMT -7)   
((((((((( Superwoman )))))))))

Great big hugs for you sweetie!! I'm SO glad you found us. WOW you got nailed, didn't you!!! You ARE the poster girl for Lupus!

No wonder you feel so desperate . . . all of this change . . . .in such a short time . . . at such a young age . . . You just have a LOT to deal with all at once.

I wasn't able to read all the other posts to you . . . but I wanted to welcome you to the forum, and direct you to the links at the end of my signature. It sounds like you've had a crash course in Lupus already.

The great thing about posting at a forum like this is that you will find everyday support that the medical community just can't provide. You've got other people who really understand you.

I'm glad you found us and I hope you'll post updates in your medical care and any questions you might have.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Superwoman
New Member


Date Joined Sep 2008
Total Posts : 8
   Posted 9/22/2008 12:06 PM (GMT -7)   

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.  
This has occured within the past six months:
Medical history: SLE, SLE Nephtitis (Stage III/IV), HTN, pnuemonia, pleural effusion, pericardial effusion requiring drainage (2x)
 
Surgical History: Percardiocentesis with pigtail catheter placement, renal biopsy (2X)
 
Daily Meds: Nexium(40mg), Calcium Carbonate(500mg 3x), Adalat(60mg 3x), Demadex(50mg), Plaquenil(200mg 2x), Zoloft(50mg), Spironolactone(400mg), Atacand(32mg 2x), Prednisone(80mg), Lebatalol(1000mg 2x), Clonidine(0.2mg), Plaquenil(200mg 2x), Pravachol(20mg), Zofran


Superwoman
New Member


Date Joined Sep 2008
Total Posts : 8
   Posted 9/22/2008 12:30 PM (GMT -7)   

Hey Serina,

              You didn't offend me in any way. I actually do blame myself for having lupus. I'm a people pleaser and in order to not upset anyone or be on bad terms with them I often times find myself holding things in and over exerting myself. Medically they can't tell us where lupus comes from and for me this has only made it worse. I say this because no one in my family has lupus and because i've had such major complications at a young age and I've been told that lupus doesnt usually hit younger people as hard as it has hit me. The complications I've had are usually seen in older patients. This in itself has solidified me blaming myself because I feel like God is punishing me. I've sat and I've thought on countless occassions about what I could possibly have done in order to deserve this but I can't come up with a single reason. I may never understand and maybe i'm not supposed to but until science can come up with a reason as to why I have lupus then this is the only explanation that I have to go by.


This has occured within the past six months:
Medical history: SLE, SLE Nephtitis (Stage III/IV), HTN, pnuemonia, pleural effusion, pericardial effusion requiring drainage (2x)
 
Surgical History: Percardiocentesis with pigtail catheter placement, renal biopsy (2X)
 
Daily Meds: Nexium(40mg), Calcium Carbonate(500mg 3x), Adalat(60mg 3x), Demadex(50mg), Plaquenil(200mg 2x), Zoloft(50mg), Spironolactone(400mg), Atacand(32mg 2x), Prednisone(80mg), Lebatalol(1000mg 2x), Clonidine(0.2mg), Plaquenil(200mg 2x), Pravachol(20mg), Zofran


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/22/2008 2:50 PM (GMT -7)   
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
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 10/19/2008 12:07 PM (GMT -7)   
HI there. First of all warm welcomes & hugs! I too will be 21 nov 7th. I have yet to get a diagnosis of lupus but believe thats what i have. I havent felt the hottest here this past week..in fact everyday ive felt bad at some point. Its very hard as I have a 15 month old son and the holidays are coming up...halloween...my bday the 7th, thanksgiving, christmas...im wondering how i will cope as i have a rheumatologist appt nov 12th. i almost want to see if i can get into an earlier appt but dont want to ruin the holidays more than i already feel i am for my family. I wont go into my story because that would take a while. Feel free to message me though. My email is <email address available at left> if you would like to talk one on one as well :) Take care and God Bless :) -Brit

Post Edited By Moderator (Lynnwood) : 10/19/2008 3:01:11 PM (GMT-6)


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 10/20/2008 5:29 PM (GMT -7)   
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
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


fredsmom
New Member


Date Joined Jul 2008
Total Posts : 10
   Posted 10/21/2008 6:41 AM (GMT -7)   

Hi Superwoman,

I completely understand where you're coming from.  I had just turned 21 when I was diagnosed and I was a total mess.  The lupus consumed me physically and mentally for a little over a year and then finally I responded to treatment.  The only thing that got me through was my boyfriend at the time.  We had just gotten together-maybe a couple of months before-so I assumed he would just hit the high road but he stuck by me through the whole thing.  I eventually went on to marry him and we have been married for almost 12 yrs now and have 4 kids.  He still helps me when I'm "flaring".  Never questions anything or harbors any bad feelings, just helps me by sticking by me and making me laugh.

What I'm telling you is a good support system is key to your mental health.  For me, when I am mentally well physically I seem to be a little better.  Not always perfect or even good but can just get by which is enough for me some days!! wink

The people on this forum are great (I lurk alot!).  Like they've all said-talk talk talk on here.

Feel better-and my thoughts are with you.

Kelly

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