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Regular Member

Date Joined Mar 2008
Total Posts : 89
   Posted 3/24/2008 4:45 PM (GMT -6)   
I have been battling with symptoms for almost two years now, but wasn't
officially diagnosed with Lupus until about 5 months ago. Along with Lupus
I am also experiencing some mild symptoms of RA.
Although I have read lots of books and looked at a lot of stuff online, I just
don't feel as if I have a handle on Lupus. I get frustrated because prior to Oct
2007, I never had any problems with my health then literally, one day it all
hit me.. pain in joints, exhaustion, fever.. you name it. The doctors thought it
was Lyme disease at one point.
Now that the diagnosis has been made, and I am on all the normal meds
plus some ones to counteract the effects of others, I feel as if I am always
"unwell" and yet none of my friends or co-workers truly understand how it
affects me.
I have been reading the posts here for awhile but decided that it would be
nice to converse with people that understand how I feel. I am just now going
into a flare too so I can barely hold my head up as I type this. UGH!
A bit about me.. I work full time, have two kids under the age of 10, who are
very active with acitivities and the like. I have a husband who is just now
beginning to see the effects of everything on me (thank gawd). I am also very
active with PTO, community theatre, etc. I don't know how it do it all some
I know there are lots of you that feel the same way. Anyway.. just wanted
to say "Hi". I am almost at the end of my Pred taper..down to 2mgs and looking
forward to when I am completely off of it. My doc told me to lose weight and
exercise more but I have no energy to do it. I guess I need some support from
others that have been there.

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 3/24/2008 5:00 PM (GMT -6)   
Hi Ti,
   Welcome to the forum. You have come to the right place for support. This group is awesome! We understand what your going through and will help you in anyway we can.
   You have a full plate with working, kids and this disease. With a busy lifestyle its hard to catch your breath sometimes but, you really need to try and pace yourself. You mentioned you have been reading posts so I hope you have read the spoons theory. If not this is the link:              www.butyoudontlooksick.com  It's a good story that will help you learn to pace yourself and help your family and friends understand what you go through on a daily basis. We all really like it here, I hope you do as well.
    Feel free to ask all the questions you want and share anything with us. Please take care and keep us updated. You will be in my thoughts and prayers.
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 3/24/2008 6:13 PM (GMT -6)   
Hi Ti, welcome to the group! This is a great place filled with wonderful people that are willing to help one another. It is very hard for healthy people to understand this disease and how it makes us feel and Babs gave you a great link on the spoon theory, share it with your friends and family.

I look forward to getting to know you. Feel free to ask more questions.. take care

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

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 3/25/2008 3:12 PM (GMT -6)   
Hi Ti and welcome. We have a great group of people here who are very supportive and helpful. I think a lot of us share in your frustration of feeling very alone with this disease and like very few people really understand the daily struggles. The Spoon THeory that Babs posted about is great - give a copy to your hubby, other family, and close friends.

Please ask any questions you have or have a good vent if you are having a rough day. You are among people who really do understand.

I'm a mom with two busy kids too (10 & 6) which makes living with lups extra challenging!

Take care and I'm glad you joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Co-Moderator: Lupus and CFS Forums

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 3/27/2008 8:55 PM (GMT -6)   
Hello Ti!
Another welcome to you! Yep, we've all been there and we do find that getting others to understand our situations is really difficult.  I'm having a conversation with my husband as we speak, and he just doesn't get it....... (SIGH).
We're here for you in good times and in bad.  Welcome to the forum!
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, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Audrey Ann
Veteran Member

Date Joined Jul 2005
Total Posts : 815
   Posted 3/27/2008 11:04 PM (GMT -6)   
Greetings Ti! Welcome. Sorry to hear that you are experiencing the annoyance of trying to explain the effects of lupus to people who think you look fine so how could you be so sick. It does get depressing sometimes but eventually your husband and some family members will understand. Hopefully this will happen sooner rather than later!

Regardless, we are happy to meet you and hope that you will feel the support here! We have a lot of very caring and intelligent men and women here and you will learn a lot!
Audrey Ann
Lupus and RA and LOTS of Medications!


Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 3/28/2008 7:22 AM (GMT -6)   
Justed wanted to say Hi and welcome! Judy
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