why now

[crispy]

hi guys, im new to this site.

i was diagnosed when i was sixteen, to be honest, i didnt really understand what was going on. i was offered some help, support groups etc. but chose not to use them. i thought i could get through this on my own. and i thought i did a pretty good job. it felt like if i complained or moaned, then people would think i was milking it, after simpathy and all the usual. so i never complained, never spoke about it, was determined not to let it affect my life. and for nine years i buried it. visits to the doctors were every few weeks, then months, and that was all, easy, i could do this.

I was so wrong....

all of a sudden its hit me, im now 25, and to be honest i feel a total mess. most of my free time is spent wishing i was no longer here, the only thing that keeps me going is my girlfriend, i try to talk to her, but i dont think that she understands, nobody does. i really need to speak to people like me, i really need help, i really need friends. i feel so alone right now. i am killing myself in work 6 days a week, my bones constantly ache, my kidneys hurt, my feet and ankles swell up so much i can hardly walk. i feel so pissed off with this at the moment. i am afraid of what i will do. i am desperate for help.

chris

[goats]

Chris.. I am glad you found the site(not glad you have lupus0
couple of questions" are u seeing a good lupus specialist?
are you on meds?
these two things are very important
there are a couple of good letters here you can print off and give to your girlfriend and family... " letter to normals" and the spoon theroy"
look under "family and friends"
you could also ask your doctor to help you with the depression.. I have had to go on antidepression because of lupus and lifes problems.. there is nothing wrong for asking for help.. and it can be a symptom of lupus also

there are other men here .. that can help with advice..
the chat room is great place to meet other lupies to get information. support and friendship..when you have time .. drop by

remember we all go though many of the same things
we care ..so read the boards there is great information and if you don't find what you need ..start a new one with question and someone will come along and try to help you out... education, good doctors and support is needed with lupus
I look forward to talking to in chat some time
take care

[jude mack]

Hi Chris

Welcome to the site, you sure came to the right place for friends and support.
There is a lot of stuff to read on this site, and you will learn allot by reading
the posts. You are not alone anymore, you have all of us here.

Everyone here will try to help you through this awful time, so keep posting, most
of us have been through allot of the same feelings you are having now. I guess
we all go through feeling lost and hopeless at times.

Sounds like you need to modify your working hours, too much work and stress
will only add to your pain, would it be possible to cut down on your work hours,
to a least give you some time to rest and get things back into perspective? I hope
you start feeling better soon and it is nice to meet you.

Take Care
Jude :welcome:

[crispy]

hiya goats,
thanx for replying so soon.

im on loads of medication, and as for the doctor, well hes a renal specialist, not really specialising in lupus. ive been under him since i was diagnosed, but rarley see him, its always a different member of his team, but then thats the NHS for you, alt when i tell them how im feeling though, they only seem concerned about the physical side. that i can deal with, its whats going on inside my head that is the real bother. i have asked my GP to refer me to a counsellor. they offered me antidepressants, but i feel they just cover up the problems rather than solve them. if you say that they have helped you though. i may give it a try. im just so tired of feeling this way, my work is suffering, i feel my relationship is in trouble, but i cant understand how it's taken 9 years to finally get to me.

thank you once again
speak soon

crispy

[crispy]

jude,

thank you for your reply, finnaly i feel like i can let it all out, i dont have to hide my feelings anymore, i just wish i could find the strength to beat this. i really need to stop working, but i cant.me and my girlfriend have got a mortgage, which we're finding a struggle, she works long hours like me, we never see each other. i've no time for a social life (i seem to have lost all of my friends anyway), on my day off, i cant seem to get out of bed, ive DIY to do around the house, but i can barley stand. then i dose myself with painkillers and back to work. i just feel like im living to work. sorry to comlplain, but i feel so angry and let down by life. i didnt think it would be this hard.

chris

[Tom]

Hi Chris and welcome,

I understand what you're going through. I fought Lupus my whole life not knowing what it was. I finally got my dx 3 years ago but it took it's toll on me. Your Rhuemy is the key for treatment, hopefully the right meds will get things going for you.

Knowing what meds you are taking helps us with direction and questions to ask your Rhuemy about if something doesn't seem right. You may have to make adjustments in your life, most of us do even if they are minor ones.

If you have any questions, ask away. Hang in there and keep fighting, it's been worth it for me.

[debralee]

Hello Crispy and welcome to the site.

I'm sorry that ouy are oging though such a hard time right now. Unfortunely this can happen with chronic illness such as lupus. :(

Ouy may want to talk to oury doctor again and reconsider the anit-depressants medication (at least until ouy feel like ouy have things more undercontrol). OUy will fine that many peolpe with chronic illness are taking anti-depressants. It isn't a sign of weakness on ouyr part at all. It could be a chemical embalance and the medication could make a world of difference.


Ouy may also want to join us in chat from time to time...... ouy will find many amazing poelpe there. We offer support to each and have fun. Sometimes our conversations are light and fun andothers times someone might need a shoulder to cry on or to vent some frustrations. We try to be there for each others needs at the time.

Let us know how ouy are doing.

God Bless,
Deb
:love:

[WalkingWolf]

Hello Crispy and welcome to the site,

I am at a loss on where to start. My life with SLE started off in very much the same pattern as your own. Diagnosed in Apr.' 79. Without getting into the volumes of health (both mental and physical) issues at this time, I too rejected any outreach to others and decided I could do it on my on. After a full 10 years of this I was finally able to break through the ice and begin to learn to live with SLE and discover my boundaries. I am now 41 (26yrs SLE), married and live a relatively limited, relatively normal life with many meds and issues almost daily. You are correct in identifying the most common mistake by the modern medical community, trying to correct the physical. I work in healthcare and one of the first things a healthcare provider is supposed to learn is that you are treating a PATIENT not a lab result. The mental/psychological aspect of any person, regardless of what the life stressors/pressures they are facing needs to be cared for as importantly as any physical ailment that may be noted.

As a male with Lupus we are in the minority (but hey, gals don't get all worked up), but this forum and the information presented here is some of the very best, downhome information you will find anywhere. The compassion and understanding is unmatched, and while you may never meet most of these individuals, I challenge you to see if you know anyone on your block any better than the people of this forum, once you have been here a few months.

We're here for you,

Take care and GOD bless,

WalkingWolf

[nidean847]

Hi Crispy,

I am also new here....and also I have wanted a while to join a outside support group, which my sister accompanied me last month. I never wanted to go because it's hard for me to see other cry or be in so much pain like myself.

This disease does strange things to us not only phsycial but it effects some of us on an emotional level way more then we give this disease credit for.

I was dx'd while in my third year of undergrade with a connective tissue disease, they didn't label it Lupus until 3 years ago (I am now 30).......I also had a 3 year-old to take care of.

I keep most things to myself too....my husband which I've known since we were both 15 is slowly coming around.

It's so hard to tell you to stick with work when I just went on disability from work three months ago because my body just couldn't take working 10-15 hours a day anymore ...and "playing super woman"...My career is everything to me...besides my family...I worked so hard to get through school/while being ill and trying to keep my family together.

Maybe you should think about resting for a while to help your body ....can you take a leave of absense from work? Do you have STD and LTD on your job? Look into your work policy.


FMLA is also a good thing.

Thanks for sharing..and if you need to..you can email me if you like.

Nikki

[crispy]

<div class='quotetop'>QUOTE</div><div class='quotemain'>Hi Crispy,

I am also new here....and also I have wanted a while to join a outside support group, which my sister accompanied me last month. I never wanted to go because it's hard for me to see other cry or be in so much pain like myself.

This disease does strange things to us not only phsycial but it effects some of us on an emotional level way more then we give this disease credit for.

I was dx'd while in my third year of undergrade with a connective tissue disease, they didn't label it Lupus until 3 years ago (I am now 30).......I also had a 3 year-old to take care of.

I keep most things to myself too....my husband which I've known since we were both 15 is slowly coming around.

It's so hard to tell you to stick with work when I just went on disability from work three months ago because my body just couldn't take working 10-15 hours a day anymore ...and "playing super woman"...My career is everything to me...besides my family...I worked so hard to get through school/while being ill and trying to keep my family together.

Maybe you should think about resting for a while to help your body ....can you take a leave of absense from work? Do you have STD and LTD on your job? Look into your work policy.


FMLA is also a good thing.

Thanks for sharing..and if you need to..you can email me if you like.

Nikki
[/b][/quote]




hiya nikki,

firstly, i take my hat off to you. i find looking after myself difficult at times, so i can't imagine having to keep a family together as well. if im honest with myself, i cant do my job anymore. i work as a chef, and the long hours, hot kitchen, rubbish pay is too much for me. The company i work for are pretty heartless, there is no loyalty towards the staff, im just a payroll number. my manager however is fantastic. she works the rota to suit me, and in recent months has bent over backward to make life as easy as possible. but i still find the day to day work difficult. my girlfriend works long hours too, but is looking for a new job with a better wage so i can go part time, sounds good, but my pride is getting in the way. i feel like i should be supporting her. as a man feel i should be the main bread winner (this may sound old fashioned but thats just how it is). also i have looked into benefits i could claim, admittedly i havnt looked too deeply, but basically, to go part time im not entitled to any tax credits, and to finish work completely i would recieve upto ?78.00 a week. i would have to live on this for a year, and then maybe they would consider me for incapacity benefit. there is now way we can live on that kind of money. we would loose our home. so at the moment i feel trapped. i come home from work and feel exhausted, but at the moment i have to put money before my health. i suppose i could look for another job myself, but i love cooking, and feel that if you have to spend most of your week at work, then it has to a job you enjoy doing.
i have lost my friends, my confidence, its made my life pretty miserable. my job is the only thing left that i enjoy, and i feel like giving it up is a step closer to letting lupus beat me.

crispy

[nidean847]

Good Day Crispy,

You're make people happy for a living...so I KNOW why you love your job.
I miss my job too...It's hard being so young...you're really young...lol...me hmmm...some folks would say that 30 is over-the-hill...lol

I understand the 'ole fashion thing' cuz my husband and I live that way. When he lost his job and I was the only one working for 3 months also being in one of my worst flare-ups...he would talk about not working everyday...saying that he should be taking care of me..bluh...bluh...

It's so good to hear that you have a girlfriend that is sticking by your side through all your health problems.
Sometimes it's hard for family and friends and..yes...even the lupus patient to talk about how the disease is effecting their lives..I am slowly comin' around. My co-workers were shocked when they found out that I had this disease that I never talked about. I would come to work and work long hours even when I wasn't feeling well.

I am in Marketing and I love every minute of my busy job. I love talking with my customers and work partners.

I too feel like Lupus is getting the best of me and I've been so down too. The world can be a lonely place when you have an illness.

I live in the states and I applied for disability but I was denied...so I don't know what's next thank God I still get 75% of my pay from my company.

Nikki

[helloos]

HI CHRIS. style_emoticons/<#EMO_DIR#>/wavey.gif

Welcome to this site. I am glad that you found it. It is very important to stay in touch with people who can relate to what you are going through. As for myself, there are no support groups in my area, so this is it. I don't like to talk much to my hubby about things cause I feel like a complainer. Only a select few know about my condition while others just know something is going on. I struggle with the work load of being a full time paralegal in a law firm and have two children at home ages 14 and 17, one of which is in football and one of which is searching for college and in sports as well. I attended every game faithfully until March forward of this year when things started to go down hilll and I got my diagnosis. It is very difficult not to attend if I am not ok, as I am the go getter and like the energizer...who keeps going , going and going....between work, kids, housework, games, etc....etc... like many of us. So when you are stricken with this disease and your mind is still there wanted to work, wanted to go, feeling like you are missing out if you don't.....and your body is saying, no you are not going. Nope. Nope. Nope. My mind and my body fight all the time. It is frustrating. I too have a mortgage, two car payments, blah blah blah. My husband says to stay home, but I know that is not possible. He offers to get another job, but I do not want to put that stress on him, work him to death? Nope, not an option. So I know how you say you feel stuck, because you are. Unless you get rid of your house and get something affordable where one can pay it, you are stuck. Unfortunetly, I think the stuck will eventually be forced to become change. That is the downside, you aren't listening to your body and you are going, going, going, and it will eventually crash. For me, I am waiting for the crash, and until then keep going as much as possible, with the rest in between..... it is unfair, but the way for now.

[pennylp]

hello Crispy,

A big welcome to the site.. I am so glad you found us...And I am sorry you are so down.. I hope we can cheer you up... Because on this site we are all in the same boat.... some worse than others.. but we are
all here for each other... To support and confort each other when we need it.. and to make each other laugh and feel good... There is a wonderful Group of people here from all over the world.... I have made such wonderful friends..... And you will too... Make sure you join us in the chat once in a while so you can talk one on one with us.... Welcome again....

Love Penny

[Shera384]

Chris ((((hugs))))).
Welcome to this site, there are a lot of helpful, supportive people here, you just come on and chat when things get too much for you. style_emoticons/<#EMO_DIR#>/cloud9.gif

Did you get medical insurance on your mortgage?, I didn't, silly me. but if you do come out of work it will pay the mortgage & any bills that you have covered with insurance. I have a loan that the insurance is paying for me. I'd be in the courts otherwise style_emoticons/<#EMO_DIR#>/laugh.gif

You really need to start talking about how you feel, & here is a good place to start, it should make it easier for you to tell people & doctor's exactly how you feel. You should also be seen by a rheumy, get your doctor to refer you. & tell your gp & any specialist you see exactly what's going on, make a list & phone for an earlier appointment. Don't let them fob you off, some of them are always in a rush, my gp is like that, be adament, make them listen love.

But most of all, be a bit selfish in all this, think about you once in awhile, put yourself first.
All my love & hugs.

Dee
xxxxx

[crispy]

hiya dee,

thanx for your kind words.

Well, as for my mortgage, we have mortgage protection, but i couldnt get insurance, nobody would touch me, and those that would, were asking for stupid amounts of money. so its work, work, work for the time being. some people at work, have suggested, selling the house pay off the mortgage and rent somewhere, but this is my home, and me and my girlfriend dont want to give it up.

as for the rhumy, well ive spoken top my renal doc, and they have send a letter of referal, ill still get to see him, but the plan is that appointments will alternate between the two doctors. just have to wait until an appointment available now.

im going to beat this, for my sake and my girlfriends

still feeling unsure about taking tablets for the depression thing, but feel that i want to talk to somebody before going down that road. so all in all, things are a bit cloudy, but i feel im going to get through this just by finding this site. it has saved my life

chris