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dmott
04-22-2009, 11:16 AM
How does everyone stay so positive! I just started working again after losing my job of 16 years due to lupus. The lupus just gets me so depressed. I feel like it is not worth it to keep fighting. I only have two friends and one of them tells me to stop talking about being sick. She tells me that when I talk about it it brings the devil into my life. I am sorry but I feel so bad and dont have anyone to talk to. I have been reading alot of post and some of you are so positive and have a great outlook. How do you do it. Please help!:hissyfit:

rob
04-22-2009, 11:25 AM
Hi dmott,

My name is Rob, and I'm a moderator here. I moved your "help!" post and gave it it's own topic title in the "New Members-Introduce Yourself" area of the site. Giving it it's own topic makes it alot more visible to everyone and will produce many more responses this way. Thanks,

Rob

dmott
04-22-2009, 11:40 AM
thanks Rob, I really dont know how to work this site to well. Thanks for moving it. I really need all the support I can get right now.:hissyfit:

wrightrs
04-22-2009, 12:40 PM
I'm probably not one of the ones you thought was positive. But the only thing that helps me be a little more positive is Prozac. My lupus causes me to be very depressed a times.

rob
04-22-2009, 12:46 PM
Dmott,

Don't worry about it, you'll get the hang of it. Anyway, sorry I got sidetracked, but I'm back. I was diagnosed with SLE 5 years ago. I might come across as positive alot, but believe me, I have my lows. Ironically, I had been in my career for 16 years too, and I was not doing well health wise. I eventually got the Lupus diagnosis, and I'm on full disability now.

The way I see things, is that despite Lupus, I still have good days, I just don't have them every day. There were alot of doors that closed for me after being diagnosed, but I've also discovered many new ones that I never would have found otherwise. I've learned hobbies and interests that are within the limitations Lupus puts on me. I know about wanting to give up. Not long after the diagnosis, I lost everything I had worked so hard for. Career, fiancee, friends, all gone. I gave up completely and I am lucky to have survived a suicide attempt. But now I can see that had I succeeded, I would have missed out on so many good things and never had the chance to meet new people and make new friends. All these good things have happened in the midst of me dealing with Lupus.

Lupus will change a persons life, but it's certainly not the end. Just because the path I planned so carefully for my life can no longer be followed, it doesn't mean that there are no alternative paths that are just as good, or even better.

I find that coming here and talking to others with Lupus does wonders for keeping a person positive. I can come here and talk to people who understand what it's like to live with this disease. I know you think you don't have any more good days left ahead, but I'll bet that you do. Right now, you feel physically, and mentally awful. But you can learn to live with and treat your symptoms, and still have a fulfilling life. Anyway, welcome to our group. we are a pretty laid back bunch, so please feel free to jump into the conversation whenever you want. You can cry, vent, laugh, or anything else here, we'll always listen. Hang in there, things WILL get better.


Rob

pamjw
04-22-2009, 01:11 PM
First off welcome to this site, it does help to talk to others and try to work out issues. So sorry about your job loss!
I think finding some positive things in your life can help. I know at times I feel so depressed and its hard to find the positive side of things. Eventually I come out of my funk and its good for awhile, it sure does help to talk. If your friends aren't supportive talk here. I came here because most people don't understand, they just blow you off and don't care.
You should also talk to your DR about your depression.
What are your symptoms with lupus

Pam:musik21:

dmott
04-22-2009, 01:26 PM
I was told I had lupus in 1997 since then it has effected my brain, kidneys. lungs and heart. I take so many pills a day I feel like a junky:laugh:. They have taken me off of the Imuran and put me on methotrexate to see if that will work. I take 10 pills every friday and I am sick for two days. I am dealing with alot of swelling in my legs, liver and around my heart. It just seems like I get on thing under control and something else happens. I am so glad I found this group, like I said before my friends just dont understand how I can be so sick and not look it. Does anyone have a problem with weight gain from all the steriods? I have gained 82 lbs and dont even look like myself anymore. That is another reason I get so depressed. I came from the doctor today and was told due to all the steriods I now have cushings syndrome. I will try to keep my head up, thanks for all the replies

AyahsClan
04-22-2009, 02:04 PM
How does everyone stay so positive! I just started working again after losing my job of 16 years due to lupus. The lupus just gets me so depressed. I feel like it is not worth it to keep fighting. I only have two friends and one of them tells me to stop talking about being sick. She tells me that when I talk about it it brings the devil into my life. I am sorry but I feel so bad and dont have anyone to talk to. I have been reading alot of post and some of you are so positive and have a great outlook. How do you do it. Please help!:hissyfit:

We all have our ups and downs with lupus. IMHO this site has actually helped many people to have more ups than downs simply by having an army of caring people out here who understand. I was as down as down can be when I first came here and would not have been able to deal with a bunch of people who were pretentious in any way.

It's OK to vent, nobody will judge you, and more than likely there is someone here who has experienced exactly what you are going through, can relate, are living proof that the sun will come out tomorrow - and you might just have an up day! Maybe just a little upper..lol..but every smile is priceless.

You have more than two friends now.

{{{{hugs}}}}

Pearl
04-22-2009, 02:09 PM
Hello there...

You have lupus...IT does NOT have you. So long as you have a single breath left in your body, you are fighting and winning this battle. Don't ever give up and don't ever give in. Everyone here has had days (weeks, months, years) of battling depression related to this disease. So everyone here can relate to your sadness. I know it is overwhelming at times. You are not alone. We are here for you. Keep fighting the good fight. Your courage in doing so strengthens us all.

Best wishes for a brighter day,

Jana

MicRoMediC
04-22-2009, 03:01 PM
You are not alone. I just joined this website last week after being diagnosed two weeks ago. I'm definitely not upbeat and am feeling down myself. I also don't have many friends and nobody to talk to about this. If you've read my recent posts, the only person in my life is my boyfriend. He's truly my saving grace. Anyway, we're all here for you!

Angel Oliver
04-22-2009, 03:28 PM
Oh just look how many friends you have now....you are so not alone.I too have 2 friends but unfortunately they live a few miles away and i dont really talk to them about me and illness...they have their own lives and seem so busy and active and living a fun life.But even though it looks like they live fab lives...you know everyone puts on some sort of front...its not as rosey as we imagine.Ive had friends who i thought were friends.They've all gone now..thank god,cause i now know they were not real friends to begin with.But you dont realise this until you really need them.But i joined here and now i have true friends who understand me and so truly care. Its hard to cope with what you are going through but its NOT the end.Now is your beginning.You will get answers to many questions you have in your head.You will get love and support and most of all understanding.You post anything...noone will judge...but will pick you up and help you along.We also have fun on here too. Many members here are or have been very sick.......but we laugh and cry together.Glad you found us. You should also mention to your Doctor just how low you feel.They will help you with talking sessions or meds which ever you feel comfy with.....or just talk to us....either way....your getting it out n not keeping things all bottled up...so that will help you allot. I like chocolate and talk about it allot....so just a warning :)

love
Angel.xxx

mountaindreamer
04-22-2009, 03:55 PM
hi dmott,

so sorry you are having such a difficult time. I am very glad that you found us, because we all help each other when needed, and we all celebrate each other when warranted. this truly is a great place and i know you will find friends among our family of the sky.

About the methotrexate, i am no expert because i just started 3 weeks ago, but my rheumy prescribes the the injection that i give myself once a week, and i really only feel bad for about a day....some have no problems, and some are only down about 1/2 day. you might want to talk to your dr. about changing.

I wish there were magical words that could make the depression go away. One of my main coping techniques, is to change my goals....for example, where i used to go to the garden store and come home with trays and trays of flowers, i now come home with three individual flowers. I know that i don't have more than that in me, but it makes me so happy to get out and plant those 3 plants....in other words, we just have to change what has always been "normal". we learn to set new "normals".

so sorry you are dealing with everything, and we will do our best to help you overcome some of the trials and frustrtions. feel free to jump in on any thread, please make yourself at home here.

Ria0331
04-22-2009, 04:05 PM
All of us have our low points and or depression days. You aren't alone and when you feel down come on here and vent it all out to us cause we are here to help. Know that you aren't alone at all. I just a few days ago felt similar feelings to you about feeling like why keep fighting. Well remember that your family and 2 friends love you. The one that says that talking about being sick will just bring in the devil says to me that she is scared for you and is worried that bad things will happen faster if you keep bringing up being sick. That is my take on but i could be completely wrong. We all have our good days and our bad days and as you continue to read posts you will see that we all are in this togather so please feel free to talk about whatever you wish and vent away. I know it helps me to get things off my chest.
Hugs
Maria

maguadalupe
04-22-2009, 05:19 PM
Hello!!!!! welcome to this site we all understand you trust me i believe that everyone that has lupus has good days and bad days, but what i do is that i don't thing about me having lupus just learn to live with it . in my mind i say every morning before i give thanks for been here to enjoy my family i control my lupus i will not let it control me . my mother told me that when i first go dignosis with this ugly diease . if you need a friend i will be here for you

alot of hugs!!!!!
maria

froggal
04-23-2009, 12:06 AM
Welcome! Sometimes lupus is absolutely overwhelming. It is hard to be positive, and it is even harder to stay that way. Please know that this site is a wonderful place to find support, laughter, and understanding. We dont expect or care if you are positive or not because we have all been there. It is hard not to smile while here with these fun people. Hopefully, we will help bring positivity to your life. As for your friends that dont want to hear about your health, well maybe you should consider putting them in a different catergory in your life . . . accquaintances.

dmott
04-23-2009, 08:03 AM
thank you for all the replies. This is a great site. It makes me feel so much better to be able to tak to people that know what you are going through. Thanks again for making me smile. Heres too a pain free week!!!
:laugh:

dsunshine
04-23-2009, 01:06 PM
Hello Dmott,
Welcome to the site. I have been on here for 2 weeks and already I have more answers than my doctor provided. Symptons others have or feelings. I totally understand what you are feeling and going through as does everyone else on here. Some days are better than others and the truth is we are not always positive or happy. Some of us post exactly what we are feeling and others try to be more supportive rather than negative. I try not to post negative things on here cause the world/people in it can be so mean and negative. I come to this site to find refuge and understanding. It is up to you how you want to be on here and know that no one judges you but reads and responds to you. I think the people on here UPLIFT and SUPPORT and for those days when we/you are just not feeling like going on/moving on/being strong/being positive...this is where you can assure that no one will ignore or brush you off.
Don't EVER apologize for how or what you feel. I don't. Since being diagnosed with Lupus I think I am much more verbal about what I feel or how I feel to my co-workers/family/friends/x boyfriend. I am extremely graphic and let them know and I don't sugar coat anything.
Be free to vent good/bad or indifferent.
I hope you are doing and feeling better!

AyahsClan
04-23-2009, 01:54 PM
Yeaaay! You have had a pain free week?! That is awesome!!!!

People who don't understand will sometimes think we are "feeling sorry for ourselves" or having a "pity party" when all we really need is to validated and acknowledged by SOMEONE.

What this group has done for me is given me the forum to vent, be angry, question, without being dismissed or judged. Here we WILL be validated, acknowledged, and supported.

It's not us against them, it is; if you haven't lived it, you could never understand this.

I like how several here described it: we learn to live a new normal. Our moods, depressions, and overall outlook can be effected by lupus messing with our brain functions and often meds can help. Our own personal mental/spiritual challenges with lupus can be effected by how we formulate and accept our own new normals. (I confess I battle daily on this)

I excitedly told my daughter in law yesterday that my new thyroid supplement has given me so much energy I have been able to do about 10 minutes of yard work a day! She looked at me with a blank look clueless as to what to think say or do lol...poor kid. Shortly later she insists I drive an hour and a half in terrible city traffic for mothers Day. HELLOOOOOOOOOOOOOOOOOOOOOOOO...have we met LOL?

mountaindreamer
04-23-2009, 05:25 PM
hi ayah,

i know exactly what you mean....last week, i was so excited because i had washed my car (can't remember the last time). Whenever I shared my excitement with anyone, there was always this awkward congratulations. But, I have not had anyone to respond by asking me to drive for 3 hours in city traffic....you are right, does she know you?

ashleybaby715
04-24-2009, 04:54 AM
hi dmott.
im ashley and im sixteen years old and have been diagnosed with SLE back in January of this year. i stay positive because i just look at the positive side of things. like, if i wouldn't have gone to the doctors to see what was wrong with me, back in december- i could have died. because i was in the very serious stage of lupus when i was admitted, i had fluid around my heart and lungs, my liver was enlarged, i was very very anemic and i was dropping pounds by the day.
but now, im feeling great on the meds that i am on and i have a great team of doctors on my side, and my family and friends of course. if your friends aren't being positive towards you and if they don't help you manage your illness, just come on here and talk to us. trust me, everyone on here will put a smile on your face.
you can't live life being depressed and lookin at the bad sides of things, you just have to be happy and think about the good things in life.
please when you read this- reply to my page.
i would love to talk to you about this.
talk soon and take care!
Ashley<3


How does everyone stay so positive! I just started working again after losing my job of 16 years due to lupus. The lupus just gets me so depressed. I feel like it is not worth it to keep fighting. I only have two friends and one of them tells me to stop talking about being sick. She tells me that when I talk about it it brings the devil into my life. I am sorry but I feel so bad and dont have anyone to talk to. I have been reading alot of post and some of you are so positive and have a great outlook. How do you do it. Please help!:hissyfit:

sugarfoot52
04-24-2009, 07:01 AM
I entered this group 4 to 5 yrs. ago when first diagnosed with lupus. Personally I don't like handing my destiny to one single person ie. doctors. Would rather get many opinions and weigh which ones seem most applicable to my situation. I more or less abandoned the group when my situation seemed under control. What a laugh, is this disease ever really under control? Part of this arrogance stemmed from my I can handle anything attitude, which I think has been effectively whittled down. God does have a way of humbling you. All I can tell you is that we all have lows. What usually happens with me is when I get to where I can't stand myself anymore, I'll be having a pity party, when a little voice sneaks into my head, " I'll be dogged if I give up". I hope that you can find a place to come to where you can find our inner strength. I believe we all have it, just gotta find where it is.

mountaindreamer
04-24-2009, 07:33 AM
hi sugarfoot52,

welcome back, and nice to meet you....i am glad you had several years with "lupus under control". However, i am so sorry that it has resurfaced and roared its ugly head at you.

You have a great attitude, and you are right....i give in to it for a while, then i get weary and want to give up, then i get my "attitude" back and start working my way back up.

thanks for your wise words,