anyone in los angeles??

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jojo711
Regular Member


Date Joined Aug 2008
Total Posts : 46
   Posted 1/1/2009 9:29 PM (GMT -7)   
i have just been going thru it. im sorry to whine, i dont really post alot, but do read alot to hear all ur great feedback. im just not dealing with this "it" well. its been a year now since i got sick, almost a year since i was diagnosed. im having alot of dr problems, just real depressed. im also a single parent of a 4 yaer old son, hes almost 5. and im telling u, if it wasnt for him, i couldnt get up everyday and go to work. i juat need someone to talk to, i am going to star posting as well, beacause this is just lonely when no one knows what im goin thru. i have no family, a few close friends, but they do all they cam..
 
thanks for listening to me whine
joann

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/1/2009 9:50 PM (GMT -7)   
Hi Joann,
 
Please don't ever feel that you have to apologize for telling us how you're doing. You're not whining either! Hehe.. This is your reality. These are valid, truthful feelings, and there isn't a single one of us who hasn't felt exactly the way you are right now.  I think the first year of this diagnosis is the hardest. Everything is still very new, doctors are new and some of them are just plain stupid and ignorant. Your lifestyle has changed, and you don't feel or look the way you did before all the meds.
 
You're going through a very natural grieving process. Depression is one of the stages, and it's so very important and healthy to go through these phases.  If you were dealing well with "it", that would be a worry..... You're not supposed to deal with "it" well.  You're psychologically healthy and this is what needs to happen. Give yourself a hug, and don't be hard on yourself. Be good to you.
 
It's also okay to know if you need an anti depressant.  They do help. I'm on Zoloft, and it's evened me out a lot. Looking after our mental health is as important as looking after our physical health.
 
We're here for you.  We can be your family.  I hope as time goes by, and you can post more often and get to know us, you'll realize you're not alone at all.  You have a whole forum of family members with Lupus! 
 
If you don't like your doctors, fire them. Move on.  Most of us have gone through 3 or more rheumies before finding one that fits. They are integral in network of support. You have to be very proactive with Lupus.  Be your own advocate.  We can give you tips on how to make a doctor's visit as worthwhile and productive as possible.
 
Have a restful night, and we'll talk soon!
 
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, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Moderator for the Lupus and Fibromyalgia forums


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 1/1/2009 10:01 PM (GMT -7)   
Hi Joann,

I'm sorry to hear you are having a rough time, we've all been there! That's part of the reason I love this site so much, there's always someone here to lift you up when you need it. And, always someone here that can relate to the issues that I have going on, which is a godsend, because we lupies have some strange stuff that goes on that the average person cannot relate too.

I don't know if you have read "The Spoon Theory" or not, but it is an awesome story. One that is worth reading and sending (or printing) to all your friends and family to help them better understand what your life is like. http://www.butyoudontlooksick.com/the_spoon_theory/
If you've already read it, or heard about it, I'm sorry to beat a dead horse, I just wanted to make sure you have it, because trust me, it's made a world of difference in my life. I've shared it with all those close to me and I think they are finally getting where I come from after all these years.

You are a very strong person, it takes a strong person to deal with this disease and be a single parent! So, drop in anytime you need to vent, whine or just need a little support sister, if anyone deserves it you do! We're all here to help in anyway we can. I don't live in L.A. , far from it actually, I'm in dusty West TX, but I'm online quite a bit these days and am always willing to listen whenever you need someone, I always have a shoulder to cry on when you need it too!

Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


jojo711
Regular Member


Date Joined Aug 2008
Total Posts : 46
   Posted 1/1/2009 10:06 PM (GMT -7)   
thank u ginny for those kind words. its nice to know that people know what im going thru, but then again it hurts to know that others have to feel like this as well. I have to go to the drs on the 16th, my primary, so i hope we can talk some things out then. I am taking advice that many of u have posted about making a list of questions so i dont forget, and also taking my friend with me, because she also sees things that i dont see and knows how ive changed. lol and her memory seems to be better than mine
 
as fr restful sleep, ugh i wish. i have been sleepless for a long while now, got perscribed 5mg of ambiem, which is not working, so i have to ask my dr for other alternatives. ive been on 20 of pred for a whole year, going up a few times to 60 and then down again. was on imuran, and they changed me to cellcept. i know i am leaking alot of protein in my urine, but need to wait for a refferal, to get a kidney biopsy done they said. im just real scard i guess, i wanna be there for my son and dont know wat will happen if somethign happens to me.!! ugh i hate this!

jojo711
Regular Member


Date Joined Aug 2008
Total Posts : 46
   Posted 1/1/2009 10:09 PM (GMT -7)   

thank u melissa. yea ive read the spoon theory and i liked it, lol as much as i can like it. it makes alot of sense, some ppl get me, and then others just think im lying until they see something wrong with me. then they back away like theyre gonna catch something. like all the swelling and joint things, i get that alot in my hands, lol and i work at starbucks, so im tellin ya that makes work hard some days!! but thank u, ima hang in there, and come around here as much as i can

 

joan


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 1/2/2009 11:33 AM (GMT -7)   
Joan,

On the days that I'm at my worst and feeling sorry for myself, I remind myself of you gals out there who feel just like I do and yet have to work to support yourself while raising small children. You have my utmost respect, and I don't know how you do it. And working at Starbucks is hard work -- I know, my daughter worked there, and the pace is crazy. You can't just sit down for a minute when you feel hurt and feel weak.

Be proud of what you're accomplishing and for the fact that you haven't given up. It takes a great deal of strength to keep going. Hang in there friend.

(((((Hugs)))))

Pat
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, cellcept, plaquenil, celebrex, neurontin, synthroid, triamterene, ultram, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 1/2/2009 7:28 PM (GMT -7)   
Greeting Joan! Like Ginny says, don't ever worry about coming here to share your pain or your gripes! This is the best place for that and it does help to share and to get it out.

I remember the first year or so of this diagnosis and it was very depressing. I have come to the conclusion that people just don't really care, especially if they are the type who never really get sick. They just cannot relate.

I try not to talk about it too much now and this has been for the best. Only a few people know what I am dealing with and I really need HW so I can share and learn from the good people here.

Welcome to HW and my prayers are with you!
Prayers,
Audrey Ann
Lupus, RA, and (Maybe) Fibromyalgia and LOTS of Medications!
 


 


lespaul
Regular Member


Date Joined Jan 2009
Total Posts : 20
   Posted 1/2/2009 10:24 PM (GMT -7)   
Joann,
I pray the Lord gives you the strength to continue on and find a doctor who can help you. Please don't feel bad about telling people your feelings, how else can we know what to pray for.
Love in Christ,
Lespaul
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