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View Full Version : I want my life back.



ritzbit
04-27-2009, 06:03 AM
Hey there..I really need to ramble on. No one ever really wants to listen on bad days. They get annoyed cuz you complain all the time. I've been trying to stop getting on everyones nerves to no avail. I've been really depressed for the past month...and everyone who I thought would be there for me has gone away. No one really wants to deal with me anymore because they prefer the happy peppy giggly me that I just cant manage to be anymore.My boyfriend just broke up with me last night because he cant deal with my weird moods anymore. He told me he just doesnt feel the same about me anymore, doesnt love me anymore. I really want to just stop taking my medicatioms. They've been making me feel worse rather than better. I need my life back. It feels like its slowly been slipping away. And I feel dumb for being all upset. Ive read what other people on here have said about their own problems. I dont even have it bad. Other than purple fingers and some joint pain sometimes I didnt even have any problems til I got on these meds. I dont know. Im sorry for going on and on for anyone who reads this..

Hazel
04-27-2009, 06:11 AM
One things for sure is that you should not give up yur meds. Although you may feel like they are doing you more harm than good, you have been put on them for a reason and they will make you better in the long run. you just need to give your body time to adjust!
xx
Feel free to message me any time you need!

Gurkinbabies
04-27-2009, 07:24 AM
I promise it gets better. I'm not on meds yet, i see the rheumy for the first time since my daughter was born today (yay finally). I have sen people on the meds and yes they feel horrible at first but fter awhile they start to notice a difference for the positive. Feel free to check out my blog on Myspace. It's all about feeling depressed and wanting life back the way it was. www.myspace.com/allboutbritt It does feel as though as soon as you need them, the people you need most aren't there. I have had to deal with it myself and I have found (not that it helps me any) that people who abandon us or get very stand offish are just scared, possibly more scared than we are. They aren't sure how to even touch you after a diagnosis like this. (well some of them not all) My father disowned me at the very thought that someone in the family inadvertantly gave this to me. So please mesage me anytime you need to talk and check out the blog. There is also a video on my front page called "Lupus is Beautiful" it is an awesome video about lupus awareness, very uplifting at these times.

rob
04-27-2009, 01:59 PM
Hi Ritzbit,

I'm sorry your boyfriend broke up with you. I understand how hurt you are. I had dated a girl for 5 years, and we were engaged for 1 year on top of that, and she left me not long after my SLE diagnosis. I used to be a very social person. Very much an extrovert and the life of the party. Now, I'm a recluse, and I isolate myself, but I'm slowly learning how to have a life, and friends again. When I stopped being the happy go-lucky me, most of the people around me just stopped coming around and calling.

I know it feels like things are slipping away, but you need to keep taking your meds. Many of the drugs we have to take do not work right away, and can seem like they are making you feel even worse. But you need to give them time to work.

We all have our own definition of what's bad, and who is worse off than ourselves. Your hurt right now is no less just because you may not have as many bad symptoms as others. Your hurt is very real, and you have every right to be upset. One thing about this place-nobody is going to judge you. Nobody here will ever criticize you for talking about how you are really feeling. There are no easy or quick solutions, but believe me when I say things will get better for you. I was in the place you are right now, and it was awful. But I've learned to live with and manage lupus, and I'm making new friends. Friends who understand that I'm not always going to feel well or be anywhere near 100%. You can do this too.

You can still have plenty of good days ahead of you. You can have a good life, and thrive despite this disease. It won't happen overnight, but it will happen. You can learn ways to cope. Your meds will begin to work. And you'll be able to surround yourself with people who are not fair-weather friends. Please hang in there, and don't be afraid to unload and vent here. We'll listen.

Rob

AyahsClan
04-27-2009, 03:55 PM
Hey Ritzygirl!

Welcome to the forum. You will find a safe place to communicate your feelings, your good days and bad, and someone is always here who cares. So many of us know exactly what you are feeling and going through so your not alone in that. With this illness there is no comparison in who suffers more, if you are hurting, you are hurting and it is real and effects your entire life.

That boyfriend was lacking in the "friend" part. My ex husband was a jerk too. He actually cheated on me with another woman who went hiking with him because "you had your chance" LOL HA! He had his chance and lost it big time. I was too sick to go but after he married her she gained 200 pounds and could not go hiking anymore. Then guess who came looking for me lol...to late buddy.

What goes around comes around - you reap what you sow - karma, whatever you call it there is justice in the universe even though many days it sure doesn't feel like it. You have your life, it will just be different and doesn't have to be bad different. Your friends will change from shallow bimbos to deep intellectual empathetic sympathetic people.

Don't ever feel dumb because of your feelings. It is important to tell your doctors about the depression too. Depression really sucks. Since I been coming here I feel the validation and acknowledgment I had been lacking from friends and family which changes they way I cope with lupus.

Stick around, stay in touch, express your feelings.

BTW I love your avatar. I am an old hippy and have an Indonesian Dashiki dress on and a rainbow tie-dye sarong for a curtain. I don't fit into any mold on the planet..lol

wrightrs
04-28-2009, 12:35 AM
A few months ago I started a dairy at the (could I have lupus) site. I've only put 3 or 4 entry in it. But the last one I wrote was called something like "Other People don't get lupus" I've been very depressed for a while. And having what I call a flare. Because when I'm having a flare my doctors don't listen. But anyway the day I wrote it the dairy. I was feeling awful. A friend, instead of asking me how a felt she started telling me how good I was doing and that it was good I didn't have any serious problem from my lupus. I didn't say anything to her. But in the past I told her all the the problems I have from lupus. I have some very serous heath problem from lupus. Hearing her say this made me feel more depressed.

Hope things are g

gina
04-28-2009, 05:05 AM
Your are young and that boy didn't understand what you were going thru. i lost my husband after 20years, and now i found a wonderful man who understands did the research on the disease, helps with cleaning, cooking, and with my 11 year old son. so there is the right guy out there for you.

your friends will constantly change in your life most peopel on have one hand of friends i only have three that are there and been there for 15years. the rest are just aquaintences.
You will find a nice bunch of people to vent to here on this site. so just keep venting here they will help you, cause we understand what your going thru.

you should talk to doctor about your depression if you mention it on this site than your aware of it and needs to be address by a doctor.
Everytime you smile it will make you feel better true fact, so watch something funny. i like to watch comedy channel.:yes:

AyahsClan
04-28-2009, 11:18 AM
HI!

Just popping in to say hi and hope you are having a good day.

Love,

MicRoMediC
04-28-2009, 04:43 PM
RITZBIT! You will never be a burden here. We love to hear about what's going on and love being here for you! I know I'm not a teen, but I'm not far off, I'm 22. Please feel free to ramble about whatever you want here. I was THE moodiest teen anyone could ever meet. I went from an eating disorder to being a cutter to moving out when I was 17 because my parents were a huge part of my depression. I have been in 3 serious relationships since I graduated and am in the best one yet. You will find someone that suits you better and befriends you and is ALWAYS there for you. Whenever you're feeling down, we're always here for you.

Jerzi
05-14-2009, 11:57 PM
I'm going through similar things as you, my dear. Since being diagnosed I've lost so many friends and feel worse than I did initially thanks to medications. It's hard to keep perky when you're going through such shenanigans, but keep in mind there are people out there who understand what you're going through and are willing to listen on the bad days.
<3

maguadalupe
05-15-2009, 12:36 AM
Hi, ritbit yo should never give up in love you our young and some day you will find the right person for you sometimes it takes time but it worth waiting for . just remeber always take your meds.


maria

dsunshine
05-19-2009, 04:45 PM
Ritzbit...is this an old post as I thought I had replied to you about all this??? I hope you are doing better and finding your way through real and fair weather friends. You know you can always talk to me or anyone on this site and we are here for you! How is your mom doing? I really hope you are better and doing better? Send me a message and let me know how everything is!

Day
07-06-2009, 09:44 PM
I turned 21 in december & thought it would be so much fun..party & this summer..beach & vacation!

Then around Easter I had unbelievable joint pain.. couldnt move at all. I went to dr, got steroids & meds and it kind of got better. It was a day by day situation. It wasnt until i was so sick, i didnt eat or get out of bed, lost 20 lbs (i had no idea what was wrong) & finally went to hospital, rheumy told me i had Lupus & i thought my life was over.

I live in a town where everyone knows everyone's business, so I am afraid to go out & get questioned by peers. I stay at home, I give the guy im seeing an attitude all the time, I cry a lot...

I wont go out with friends because im afraid. Afraid ill get too tired or not feel well.. They seem to rarely call much anyway. And i dont tell anyone i have it because I dont even really know how to explain it and i dont want to talk about it/say it aloud.. :no:

reading your post, i literally was crying because i feel the same. My friends kind of label me.."sick" and its hard. Getting news so young is so hard too..

I just got on the site, so i dont know it too well but if you need, email or message me.

ritzbit
07-08-2009, 01:55 PM
I turned 21 in december & thought it would be so much fun..party & this summer..beach & vacation!

Then around Easter I had unbelievable joint pain.. couldnt move at all. I went to dr, got steroids & meds and it kind of got better. It was a day by day situation. It wasnt until i was so sick, i didnt eat or get out of bed, lost 20 lbs (i had no idea what was wrong) & finally went to hospital, rheumy told me i had Lupus & i thought my life was over.

I live in a town where everyone knows everyone's business, so I am afraid to go out & get questioned by peers. I stay at home, I give the guy im seeing an attitude all the time, I cry a lot...

I wont go out with friends because im afraid. Afraid ill get too tired or not feel well.. They seem to rarely call much anyway. And i dont tell anyone i have it because I dont even really know how to explain it and i dont want to talk about it/say it aloud.. :no:

reading your post, i literally was crying because i feel the same. My friends kind of label me.."sick" and its hard. Getting news so young is so hard too..

I just got on the site, so i dont know it too well but if you need, email or message me.


I was pumped for summer too. I love swimming and laying out and all that, and now Im butt white and sit in the shade most of the time while Im at the pool.

I wouldnt worry about what anyone says. Your sick. And its none of their business unless you want to talk to them about it. After I found out I was sick I think I really realized who my real friends were becuz some people just decided they couldnt deal with me being upset once I got the news.

I always feel like Im the one bumming everyone when we're hanging out becuz I get tired and dizzy and sometimes cant do that much. But if you have someone who really cares they'll understand. And I know what you mean about not wanting to even say it. The day after I found out I couldnt look anyone in the eye when I told them what I had, and I dont like when people bring it up.

But thats what is so awesome about this site =D everyone is so helpful and everyone on here will listen when you need to vent or when your not feeling the best.

Hope your feeling well, you can talk to me anytime you want :cute:

Day
07-09-2009, 01:06 PM
Yeah being so pale in the summer when i am normally dark sucks! i had to buy spf 70! :nah:

at least we wont have wrinkles when we're older - one big plus.

ritzbit
07-10-2009, 08:34 AM
So did I lol

Im usually really dark too. I guess not having wrinkles will be a plus lol

Angel Oliver
07-10-2009, 11:36 AM
Im wondering can you not put fake tan on,then use the high factor sunscreen in the day when out? Then you'll be tanned and noone will know? Or is this a bad idea from me? Just a thought.I do it,but then i eat lots of chocolate too...let me know what you think.xxxx

ritzbit
07-10-2009, 04:46 PM
Thats what my mom is trying to get me to do. But Im afraid those stupid lotions will turn me orange lol :-)

kirsten
07-13-2009, 09:44 PM
Ritzbit,

Your story sounds far too familiar and it seems like that's the case for most of us diagnosed with SLE.

I found out about my SLE diagnosis my first day of college. It was my first time out of my small town and without a support system. I was put on copious amounts of Prednisone and gained about 15 pounds. I never had great self esteem, but this completely murdered what little I had. I spent my freshman year of college in my room crying in bed, contemplating the worthlessness of life when my medications were worse than my disease. I was constantly depressed, nauseous, exhausted and yet restless and many times with debilitating joint pain (but i'd still torture myself at the gym 2 hours a day trying to lose weight and instead hurting myself more.) It was horrible.

Then my sophomore year, I realized that I had gained nothing my freshman year. All I had done was rob people the joy of spending time with me. You are a worthwhile, wonderful person with a disease that is not rare and not a death sentence. Be optimistic. Do what you can and be grateful for everything. Sure, most of our quality of life has been hindered, but I still live everyday better than many in the world.

We are all here for you and can relate to you. If I can help in anyway, please let me know. I know everyday is a battle.

xoxo

Dvelesaca
07-23-2009, 07:13 PM
I dont have lupus, but im with someone who does. ive seen changes on her and im sadden that my girl is in pain in all kinds of levels.

today when she had one of her moods and took it out on me, instead of me thinking about how i miss the girl i love, i took a step back and felt that not only my life has changed, but her life has changed as well.

what hurts me more is that i couldn't make her pain go away.

so i took the next step and googled lupus and it led me here tonight. Ive done research and im starting to gain some kind of knowledge of what lupus is. im going to show her this website and hope it will guide us in gaining a better understand on handling lupus together.

As a boyfriend who is with someone who has lupus, i find it hard to handle her stress and mine at the same time. it isn't easy having lupus, it isnt easy watching the person you've been with for so many years live everyday with pain isn't easy to watch. i've told her that im staying with her and im not planning on going anywhere, despite the hardship that has yet to come.




Have faith and all will be well..... everything happens for a reason and in most cases, its for the right reasons.

maguadalupe
07-23-2009, 11:55 PM
Hi, Never give up on your meds. if you feel wierd when you take meds. tell your doctor. about your boyfriend my mother use to say their many men in the sea you are still young. never give up on yourself .

ritzbit
07-24-2009, 08:21 AM
I dont have lupus, but im with someone who does. ive seen changes on her and im sadden that my girl is in pain in all kinds of levels.

today when she had one of her moods and took it out on me, instead of me thinking about how i miss the girl i love, i took a step back and felt that not only my life has changed, but her life has changed as well.

what hurts me more is that i couldn't make her pain go away.

so i took the next step and googled lupus and it led me here tonight. Ive done research and im starting to gain some kind of knowledge of what lupus is. im going to show her this website and hope it will guide us in gaining a better understand on handling lupus together.

As a boyfriend who is with someone who has lupus, i find it hard to handle her stress and mine at the same time. it isn't easy having lupus, it isnt easy watching the person you've been with for so many years live everyday with pain isn't easy to watch. i've told her that im staying with her and im not planning on going anywhere, despite the hardship that has yet to come.




Have faith and all will be well..... everything happens for a reason and in most cases, its for the right reasons.



I wish there were more guys out there like you. Your girlfriend probably feels incredibly lucky to have a guy like you being there for her while she's going through such a hard time. I hope things will get better for her and for you trying to deal with everything.