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YollyDolly
09-12-2011, 01:38 AM
Hi,

Just wondering how anyone deals with the outlook Lupus causes. Knowing that for the rest of our lives we have to work around Lupus, it won't work around us. That we are always going to be tired or something and that that effects how we can see and determine the rest of our lives. Like I have had to be off work lately, I think suffering depression but my Lupus just flaring up again and it just becomes to much knowing and thinking that for the rest of my lives there will be struggles. Like can I manage Uni which I am planning to do next year and can I handle that or eventually get into a Law career which I really want to do. It just seems too much now. I don't like how it can beat me, like I use to babysit all the time and now I so want to but don't know if I can and others in my family are so supportive but sometimes the consideration of my Lupus becomes annoying because I don't want it to determine what I do and can and can't do yet it's a bit hard to not consider it and the symptoms etc. What annoys me is I was all fine with it before as I have been diagnosed for a year and I just accepted it but for some reason now I just don't think I can, like it's hard. I don't know just if anyone has some words of wisdom because I know Lupus is hard for everyone but having it at such a young age, as teenagers, I think brings a whole lot of other concerns and worries. So any advice anyone? Please and thank you!!

Yol

YollyDolly
09-12-2011, 02:05 AM
Don't get me wring though I love and need and wouldn't be able to cope without the support of my family and a few of you may know my sister on this site, debstar. It's just hard that people, including myself are forced to consider my Lupus because of the symptoms and what it causes etc

Thanks again guys just wanted to add this.

ritzbit
09-12-2011, 04:52 AM
I'm 18 and I've had it for 2 years and its still hard. I find myself throwing myself a pitty party sometimes and truely what helps me is coming here and talking it out with everyone. I cant talk to my family because they dont get it. They are as understanding as can be but they cant understand what its like to wake up in great pain, feel great in the middle of the day, come home and feel like you just want to pass out, then cant do anything they ask because you hurt so much. I have a hard time doing the whole "stay in the here and now" kind of thing but I've been trying not to think about my future. It scars the hell out of me sometimes to think that I could have something bad happen to me because of my lupus. I could worry about getting hit by a bus too, but I dont. I've been trying to take peoples advice and live now and not worry so much about what might happen later.

YollyDolly
09-12-2011, 05:25 AM
Thanks. That last sentence or two really helps. It's just sad and scary thinking of you're potential before and after you're diagnosis and accepting that no matter how much you want it not to change it may be forced to. It's just really hard sometimes actually accepting that and I don't think anyone can ever understand until it happens to them no matter how close you are to someone and think you understand the day it happens to you it opens up a whole lot more understanding and questions and experiences and fhsksnfjdkdj now Im not making sense but maybe you know what I mean :) but those that do try to understand do make it a whole lot easier :)

steve.b
09-17-2011, 08:41 PM
i have had to retire, because of the complications of lupus.

my thoughts are try to live as you want to live.

it is not easy, but the worst thing you can do is give up on life.

depression is a bad spiral that will eat away at you, making your lupus worse.

enjoy today, for tommorrow will bring ..................... ?
(nobody knows what tommorow will bring)

running girl
09-18-2011, 06:14 AM
wow - Thanks Steve, I've been struggling to accept that I will have to live with Lupus. My doctor said my disease was only in the "emerging" stages, so I had hoped she was wrong. The last few weeks symptoms have to coming fast and furious and frankly it's really ticked me off. I am far too busy to be slowed down by this. There are so many things I want to do. But right now all I seem to have energy for is the basics. By the time I get home from work I'm exhausted.
I'm sorry, I shouldn't complain. So many on this site can't work and are in constant pain. So many have far more serious issues than me. But it sucks!!

That said, your advise is very wise. I can sit and moan about the things I can't do, or I can move forward with the things I can. Modify my expectations and activities instead of giving up. I'll be "walking girl" instead of "running girl".

Thanks again,
Brenda

Mica
09-18-2011, 11:12 AM
Hi, I was diagnosed with lupus when I was 14 and now im 20. I am currently had to take off of college because I was too sick to continue and now am finding myself having trouble getting out of this rut. I am learning it is the little things that are making this illness difficult. I could deal with the no sun and hurting all the time if I could just sleep throughout the whole night. Also, since I live in a small town I am limited to a small amount of doctors and am finding it difficult to feel better because my doctor wont listen to me. She is conviced I am crazy and depressed, but it turned out that my body stopped making my vitamins and hormones. So I always go to my family doctor before hand, because I like him and he is a third of the price. I think what bothers me most now that I am older and looking back at the past 6 years is that I missed a lot in my life. I have a twin sister so it was hard when she got to go swimming with friends, find her first love, or go to a concert while I was too sick to care.

Mica
09-18-2011, 11:13 AM
Totally agree, I wish I would have learned a lot early in my disease to except my limitations.

ruziska
09-18-2011, 06:01 PM
The thing is, instead of thinking about what we CAN'T do, focus on what we CAN. When I was first misdiagnosed with rheumatoid arthritis, the doc tells me my downhill skiing days are over. Uh, ok. Mind you I live in a state where skiing is a BIG DEAL, but it never was for me, so no loss there. I can still cross country and ski bike if I want to. I will admit that Lupus at least has given me a valid excuse to NOT ski! If you think about it, there's a lot of things we can't do even if we didn't have lupus. Just go with me here for a moment... without lupus I still wouldn't have made it to the Olympics because I'm not athletic to begin with. Without lupus I still wouldn't have been a powerhouse on Wall Street or a Broadway star, or, or, or BECAUSE I wasn't any of those things to begin with. BECAUSE of Lupus I AM more aware of the little things in life. Because of lupus, I don't take anything for granted. Because of Lupus I got my head on straight and realized what is really important in life and to me and am consciously trying to live each day the best I can and strive to become the best person I can be. Because of Lupus I've taken on the mantra "I will not die as I have lived" meaning I went through a lot of bad stuff when I was a kid and because of my husband but I will do what I have to do to rise above it.
Yeah, there's a lot of stuff we CAN'T do but there's a lot more stuff we CAN do, lupus or not.

tgal
09-18-2011, 07:26 PM
I see things a bit different then others do. I see my Lupus as my partner in life. From the day Lupus came into my life I have had to change my thinking. At first it was " I can do anything!" and I ignored the symptoms until a trip to the ER came during thanksgiving and from that moment on it was me being tossed from Doc to Doc trying to figure out what is wrong. "ANA is positive, Low Vit D, High BP (mine used to be low), chest pains, memory a small piece of what it was before and on and on even then I wanted to ignore it. I tried to "over power" Lupus. Wanted it to do what I wanted no matter what. Lupus made me suffer. The more that I fought to have my way the worse I became.

It took awhile to figure out that if I fought to have my way I lost. Every time I lost. I finally figured out that I had to change my way of thinking. I couldn't ignore this disease but I didn't want it to win either. I finally figured out that we are partners. While I don't give in to my disease I don't fight it as much anymore. I learned to think about how Lupus will react and, if there is a way to do it that won't set Lupus off, I do it a little differently. I think of Lupus and I as I would think of a Married couple. Neither gets their way all the time. They have to learn to compromise if the marriage is going to work and Lupus and I have to compromise if we are going to work.

I had to go on disability due to the seizures that were brought on and it seems every few months I get another disease added to my list. One day I was upset because I wasn't working and things were so hard on my daughter and I. She came out to see what was wrong and I told her that I felt that I had let her down. She hugged me and said "Mom, I am not upset. For the first time you are home when I get here. You get to go to all of my things at school. I am not sorry at all".

It's all about perspective people. Lupus and I are partners. Sometimes I think pushing my lupus out of the way is worth it. Last week was an example. I worked 20 hours over a 2 day period to help take donations for people that lost their homes in the fire. I knew it would make me worse but it was worth it. I was in bed for 2 solid days after and not feeling good the rest of the week but I would do it all again. I can't live my life like this though. I have to consider what Lupus will do when I make my decisions. I still enjoy life but I know that my life is now a compromise. I find that to be much better then a loss

steve.b
09-18-2011, 10:16 PM
if i was to focus on what i have lost......... i would cry
if i was to focus on what i cannot do ....... i would cry
if i was to focus on what happens next ... i would cry

i focus on what i have left ......... and i am content
i focus on what i can do ............ and i am content
i focus on my family ................. and i am content

i accept my limitations, and work with them.
my desease will limit me, but not defeat me.

tgal
09-19-2011, 09:42 AM
I see things a bit different then others do. I see my Lupus as my partner in life. From the day Lupus came into my life I have had to change my thinking. At first it was " I can do anything!" and I ignored the symptoms until a trip to the ER came during thanksgiving and from that moment on it was me being tossed from Doc to Doc trying to figure out what is wrong. "ANA is positive, Low Vit D, High BP (mine used to be low), chest pains, memory a small piece of what it was before and on and on even then I wanted to ignore it. I tried to "over power" Lupus. Wanted it to do what I wanted no matter what. Lupus made me suffer. The more that I fought to have my way the worse I became.

It took awhile to figure out that if I fought to have my way I lost. Every time I lost. I finally figured out that I had to change my way of thinking. I couldn't ignore this disease but I didn't want it to win either. I finally figured out that we are partners. While I don't give in to my disease I don't fight it as much anymore. I learned to think about how Lupus will react and, if there is a way to do it that won't set Lupus off, I do it a little differently. I think of Lupus and I as I would think of a Married couple. Neither gets their way all the time. They have to learn to compromise if the marriage is going to work and Lupus and I have to compromise if we are going to work.

I had to go on disability due to the seizures that were brought on and it seems every few months I get another disease added to my list. One day I was upset because I wasn't working and things were so hard on my daughter and I. She came out to see what was wrong and I told her that I felt that I had let her down. She hugged me and said "Mom, I am not upset. For the first time you are home when I get here. You get to go to all of my things at school. I am not sorry at all".

It's all about perspective people. Lupus and I are partners. Sometimes I think pushing my lupus out of the way is worth it. Last week was an example. I worked 20 hours over a 2 day period to help take donations for people that lost their homes in the fire. I knew it would make me worse but it was worth it. I was in bed for 2 solid days after and not feeling good the rest of the week but I would do it all again. I can't live my life like this though. I have to consider what Lupus will do when I make my decisions. I still enjoy life but I know that my life is now a compromise. I find that to be much better then a loss

Dang it! I just saw what section this is in and I really try not to post in here so the teens can have a place of their own. Problem is I forget to look when I am sorting through the new things! Oh well, I will try harder to make myself check the section. (No promises though. I do have brain fog LOL)

Desleywr
01-14-2012, 07:43 PM
Dear Yolander
After reading your posts I can see where you are at and how hard it is to get lupus at your age. I wanted to share with you how I feel at 58 years young with Lupus and how I enjoy each day. As a teenager I wanted to go into nursing but my mother wouldnt sign the documents. I was devastated and as this door closed another opened. I got married at 17 and was going to be a good mother at 19 and had 4preg and 2 children living. I was devistated with the loss but overjoyed with my two children. My son became a disabled child with epilepsy but my daughter and I would not be the caring or loving people we are today without the experiences we shared together the 3 of us. I divorced my first husband as he was having an affair with my best friend. I was devistated again but this gave me the opportunity to meet my sole mate my husband today. I also had the opportunity at 35 to get the education and completed my PhD, and as I was enjoying teaching at university I had a stroke. I couldn't teach after that, but I was elected as a local shire councillor and enjoyed 7 years in Council. I have now given up Council and since the stroke I have started painting watercolour, which I enjoy so much today not only the painting but the life style and people I meet.

I wanted to tell you this as at each time I felt devistated as the goal in my life was destroyed. BUT each time something new and exciting came to me. I believe for each time my life took a big turn it gave me an opportunity to say good bye and yes at times grieve but then i had the opportunity to have so much pleasure in the new direction it took me. The biggest challenge for me was to let go of the planned direction I thought I was going to take and enjoy opportunities to try different things in my life.

I do hope me telling you some of my significant life changes have helped you, so that you are able to yes grieve and get through the challenge that Lupus has brought you, and to move up to the next challenge. My advice is to never say I can't do that but try and try again many things and enjoy each.

A little side line I was the first Milkman (woman) in my home state to step on a milk depot dock -nearly 4 years. That was a challenge but I enjoyed it. I have driven ralley cars. Etc etc. you too can do and try many things. Please remember to enjoy life! Anytime you need to talk Deb has my number!
Lots of Love Desley.

YollyDolly
01-20-2012, 05:34 AM
Thank you so much!

I want to write back a whole huge message but I think I simply get it.

I just have to stay strong and I can always deal with it and some people are so much worse off. One door closes another opens.

Thank you and wow you have had a interesting life.

Sorry it took so long to reply!

Thanks again

And will definitely grab your number of Deb

xx

Desleywr
01-20-2012, 05:15 PM
So great to hear from you I have been worried for you. Ah that list of things is just the tip of what I have enjoyed but they were critical issues that I believe we're the hardest to come to terms with and then take the next open door. I can understand how very hard it is for you with Lupus more so than people who have lived life without the restrictions of lupus. I just wanted to let you know that I am here for you. I am having MRI on mon and again in a few weeks on my head then spine it is quite funny as I can't feel heat and after seeing the neuro yesterday I am aware that I can't feel a lot less on the left side. Glad you are back on line how has things been with you. I see Dr Reed thanks and I found him very good. Talk soon on line or on the phone I am currently staying out of the sun at the moment a bit too much. Love Desley.

steve.b
01-20-2012, 07:56 PM
glad to hear from you yolander.

i was afraid you had left us.

i too would like to keep in touch with you.
please send me a personal message if you would like to keep in touch.

bunny28
01-23-2012, 01:36 PM
Looking ahead can be totally overwhelming when trying to see all the ways that lupus may affect your life.

I just wanted to share a couple of pieces of inspiration that I have gotten over the year since my diagnosis. (I am older than you but had undiagnosed lupus when I completed at least part of my 8 years post-secondary education so in retrospect I get how hard, day to day can be).

Anyway at a support group meeting in my area last Summer I found myself surrounded by new university grads including a medical student who was months away from residency. They all explained that it may take them longer, or they may have to handle things differently but that they were still chasing their dreams. I don't know if you are newly diagnosed but I know some of them said that when first diagnosed they never imagined feeling as good as they now did. Whether it is finding balance in life, getting the medication concotion that works best for you, it is hard to predict how your lupus will affect your life in one year, five years or twenty years. Try to be kind to yourself.

And look at things outside the box...if there is something you want to achieve, try to think how you could do that and create balance in your life to allow you the rest and re-generate time you need.
It is so true that bad flares will happen even if you are doing all the right things...but maybe we can learn to look at some of the limitations as challenges to us to find a different road in life, a different way to affect those around us. DOes that make sense? Or does it just sound fluffy duffy?

The other thing I found was a blog by someone in a similar stage of life to me who had a positive outlook and lupus. Living well despite lupus was the them of the one I read for a while and as she learned to recognize lupus in her life, she learned to adjust but not stop living.

I don't want this to sound like I am not agknowledging the times our bodies fall into crises and even need hospitalization...I am aware of those and know that they will be mountains for us to climb but I guess I just want to focus on the in between times and try to take some control of the little things I can.

Best wishes you to you.
Bunny

bunny28
01-23-2012, 01:41 PM
wow - Thanks Steve, I've been struggling to accept that I will have to live with Lupus. My doctor said my disease was only in the "emerging" stages, so I had hoped she was wrong. The last few weeks symptoms have to coming fast and furious and frankly it's really ticked me off. I am far too busy to be slowed down by this. There are so many things I want to do. But right now all I seem to have energy for is the basics. By the time I get home from work I'm exhausted.
I'm sorry, I shouldn't complain. So many on this site can't work and are in constant pain. So many have far more serious issues than me. But it sucks!!

That said, your advise is very wise. I can sit and moan about the things I can't do, or I can move forward with the things I can. Modify my expectations and activities instead of giving up. I'll be "walking girl" instead of "running girl".

Thanks again,
Brenda

I used to be "running girl too", lol in fact I ran a marathon shortly before my wedding....

Anyway, I just wanted to say that not everyone with lupus is affected to the same degree. There are many of us who continue to work full-time, and have not been hospitalized directly as a result of lupus. It is true though that we read a lot about people who are severely affected by lupus day to day. I know it helped me to know that some people don't get all of those issues.
Take care.