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LivnMystory
New Member


Date Joined Mar 2008
Total Posts : 3
   Posted 4/7/2008 12:51 PM (GMT -7)   
  I am a 26yr old female. I was told I was born with the Sickle Cell "trait". I can honestly say that came from my mom's side. Later on when I turned 17yrs old, I began to experience a few episodes of of painful weeks at a time. At first I ignored the pain , and thought it to be nothing nono . After while it became almost unbearable. That's when I found out what I thought was the "trait", was infact the Sickle Cell Disease itself. It became easier to understand since I witnessed alot of family members dealing with the disease before hand.
  I was just learning to accept the fact of the Sickle Cell, and live with it. Afterwhile it wasn't so bad. That was until I was 21 confused . Just when I MADE myself believe things couldn't get any worse, I was Diagnosed with Lupus (SLE). I didn't want to believe it. I was in denial for a while. I wouldn't even go to the doctor's because I didn't want to hear about it. All I knew was I was a young woman with two beautiful children, and was just starting to live life. This disease they'd diagnosed me with (unlike SC), was too unfamiliar to me. Believe me I wondered in cried for a while. Until I was mentally and physically fed up.
  I later on decided to embrace it, and come to acceptance with it as well. After talking to my family, I realized I should have embraced it earlier. That's when I found out two of my Aunts had past away from lupus on my dad's side. Best of both worlds huh eyes .
  Now here I am. Im tryin to learn to live with life. Lupus has proven to be a very rare thing to alot of people. So it's been hard to find support. Now that I've found this forum, i'm hoping to understand a little better.
 
LivinMystory

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7020
   Posted 4/7/2008 1:01 PM (GMT -7)   
So glad you found us! This is a very caring and supporting community, so if you have any questions or helpful comments we always love new input!

Cheers,

Lynnwood, Co-Moderator: Lupus Forum

Dx Lupus since '00, new Dr wants to Dx Fibro instead....
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions



redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 4/7/2008 1:57 PM (GMT -7)   
If you want more information on lupus go to butyoudontlooksick.com read the spoon theory and look around the site. A good book is THE LUPUS BOOK by Dr. Wallace, check it out of the library or buy it but be sure you have the most recent edition because he updates it when enough new stuff needs to be added. I am glad you found our forum. This was the first place I found with people who were supportive and caring about each other. I actually had tried another forum but the 2 women who ran it treated anyone undiagnosed like crud and were always saying it was in the person's head. It was sad that they did to those who had yet to find a doctor willing to help what they claimed they had experienced. This forum has a bunch of really good and helpful people in it. Many who have had lupus for many more years than you or I and thus they have a lot more knowledge to offer.

Be glad your family acknowledges the lupus and SC problems. My family lost 2 people to lupus related kidney failure and another to complications from MCTD but until I landed in the hospital and came within inches of dying they still said that the 3 women who died and I were hypocondriacs with nothing wrong with us. My grandmother saw what was happening to me and remembered how she had watched 3 other family members die all with symptoms very much like my own, and heard the nurses talking about how it was too bad I hadn't been treated earlier and that it was sad my family was so unsupportive. She changed after that day. I guess it scared her and she got a wake up call by hearing the nurses talk about my disease. I know a lot of my family still denies that I am sick. I would love to have my family admit that we have a history of lupus.

Though, I do not envy you having SC and lupus. I cannot imagine having to deal with both of those.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 4/7/2008 2:05 PM (GMT -7)   
Welcome to the forum you will find somebody may answer most or some of your question that you might have.
Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 


LivnMystory
New Member


Date Joined Mar 2008
Total Posts : 3
   Posted 4/7/2008 5:40 PM (GMT -7)   
 I want to say thanks to all the responses and/or welcomes to the forum. I am glad I've found such a supportive way of dealing with Lupus(SLE) & SC.

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 4/7/2008 6:14 PM (GMT -7)   
HI and welcome. This is a great place for support, advise, to vent, etc. Feel free to ask any questions you may have. Take care and I look forward to getting to know you.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed) and magic mouthwash (for mouth sores)


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 4/9/2008 6:29 PM (GMT -7)   
Hi Livn,
   Another welcome. I answered your other post before I saw this one. You have been through alot....((Hugs)). You have found a great group here for support. They have helped me through some rough times and I'm very thankful I found this site almost 5 years ago. You won't find a more caring, giving group anywhere else, in my opinion.... :-) .
                                                                                   Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

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