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New Member

Date Joined Sep 2009
Total Posts : 4
   Posted 9/9/2009 9:52 PM (GMT -6)   
Hello all,

I hope I am doing this right. I am new to the forum and not exactly sure how to go about this. I guess I should describe me a little bit.

I am a 28 yr old mom with seronegative lupus, ehlers-danlos (type 2 & 3), raynaud's, asthma, and as of this past Monday myocardial ischema, and SVT (supra ventricular tachycardia). I am many other symptoms but they all are due to the other stuff.

Last Monday, my doctors stated my lupus was going into remission FINALLY. So I do not have to participate in the chemo meds at this time. However, I am concerned that with my heart now showing damage it may be too late. I take every day slowly and make sure I realize how precious time is. I am just so sick of being sick it is driving me batty. I push myself as far as I can go and it never seems to be enough. I am slowly regaining a network of people to help me when I need it but it is still very difficult to ask for help. I thank you all for being here and allowing someone like me to come and join you. I will go wandering through the posts and hopefully get to know you all some.


Regular Member

Date Joined Aug 2008
Total Posts : 46
   Posted 9/9/2009 9:58 PM (GMT -6)   

Hi Buttrfli, just wanted to say hi and welcome u to the forum. Im also a 28 yr old mother with lupus. This place here is great, alot of wonderful people posting, its like a family. I dont post to much, but am always around. Im sure someone else will stop by and welcome you as well. Hope u r having an okay day, and any questions or concerns or if ya just need to talk, were here.


dx sle dec 2007, meds-calcium 1.25g 2xday-prednisone 20mg-plaquenil200m 2xday-pepcid 40mg-asprin 81mg-cellcept 500mg 2xday-tramadol 50mg as needed- ambien 10mg- lopressor 25mg 2xday- paxil-20mg

Forum Moderator

Date Joined May 2005
Total Posts : 6939
   Posted 9/9/2009 10:27 PM (GMT -6)   
Welcome to the forum, glad you've joined us!
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882

Regular Member

Date Joined May 2007
Total Posts : 474
   Posted 9/9/2009 11:01 PM (GMT -6)   
Hi Buttrfli - love your screen name!
Welcome - this is a wonderful and caring group!
I am sorry to hear everything you have had to deal with. Also sounds like you are wiser than your years.
Here's hoping that your lupus will stay in remission and that you are feeling better!
Pace yourself and enjoy all that you can!
Take care,

Dx: Lupus, sjogren's, celiac, severe allergies.

Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept

Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 9/10/2009 12:28 PM (GMT -6)   
Hello Buttrfli,
Welcome to the forum!  Congratulations on making it to a remission!  I can understand your hesitance though with your heart issues.  You sound like you're keeping on top of things and making sure your concerns are known.  that is great!
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
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, PTSD. Prednisone, Imuran, Plaqunil, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6,
 Moderator for the Lupus and Fibromyalgia forums

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 9/11/2009 7:40 AM (GMT -6)   
HI Buttrfli. I wanted to add another welcome.
dx: UCTD (lupus), sjogrens, reynauds,
meds: prednisone, plaquenil, methotrexate, tramadol, neurontin,
doxepin, folic acid   

New Member

Date Joined Sep 2009
Total Posts : 4
   Posted 9/11/2009 3:00 PM (GMT -6)   
Thank you all for the warm welcomes. I will definitely be keeping in touch. Today is housework day so I am off to finish my work but I just wanted to take a minute to say thank you.
DX - Seronegative lupus, Raynaud's, EDS 2&3, Myocardial Ischema, SVT, asthma

Meds - Plaquenel, pain & muscle management, albuterol, nitroglycerin, temp on Prednisone (for bronchitis and pleurisy)

open to talk just send me a message.

Love & Light to you all and May the Sun bring you the best of blessings.

Veteran Member

Date Joined Dec 2005
Total Posts : 1944
   Posted 9/12/2009 12:08 AM (GMT -6)   
Hi butterfli-- Just wanted to say welcome. I hope to read more posts from you and that you stay as healthy as can be!
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

Regular Member

Date Joined Apr 2003
Total Posts : 104
   Posted 9/12/2009 5:45 PM (GMT -6)   
  Hi buttrfli
Just wanted to add my welcome. You will find lots of wonderful people here who understand what you are going through and who can give good advice or just listen and wish you hugs and better days. Congratulations on the remission and I hope your heart issues aren't serious.
MCTD (SLE, Scleraderma, polymyocitis), Reynaud's, Hypo-Thyroidism, Pericardial Effusion/pericarditis, Irregular heartbeat, Hiatal hernia.
 Prednisone, Procardia XL, Methotrexate, Reglan, Lasix, Nexium, Potassium, Folic Acid, Synthroid, Cellcept, Toprol, 81mg Aspirin, Vitamin D, Vitamin C, Multivitamin, Extra Strength Tylenol, Flexeril, Vicodin.

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 9/12/2009 8:13 PM (GMT -6)   
Hi Buttrfli:

Here's another welcome your way. Congrats and the remission and hope it last a very long time. I'm 44 and have a 16 yr old daughter. I've had lupus for 22 yrs now, plus I've got several other issues too. Glad that you found us and am looking forward to getting to know you. Please take care and I'll chat with you soon, I hope.

dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 9/12/2009 10:17 PM (GMT -6)   
Welcome to the forum Buttrfli

Glad you have found us. It is great to hear that you are in remission, that is really
something to celebrate! Keep taking each day at a time, rest when you need to rest and
have some fun whenever you can! And always ask for help whenever you need it.

Take Care

 MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia
 MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 

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