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lindalou68 
5:10pm, May 22, 2009
Hi, I am so I don't know how to put it in words. I don't know what to expect or what to do about this fibro and lupus diagnose. I feel so bad because my boys are finally at the age where I can really do things with them and half the time I don't feel good. I don't know I guess I just need to learn to live with this awful stuff. Thanks for reading. God bless
Comments
I know how you feel. At first I let myself fall into a depression. But I managed to work my way out of it. Its hard to take in and there is so much to it and it is very different for everybody. Some people will only have it mildly to extremely severe. It will literally take years to figure out what your trigars are and what works for you. Just read as much as possible but don't let anything that you read scare you. Becuase it might not be anything you will have to deal with but good to be educated just in case. I have found a few good books that have helped and I recommend you checking out a library for a few books rather then some of the stuff you will read online. You'll also learn to start loving the smaller things in life that you didn't ever think twice about before. Which can be a blessing because it will be things you might have missed otherwise. Hopefully you will have a little better luck then I did with meds. Took a while to find a good combo for me and then my body keeps changing. But others they try one drug and it works miracles for years and I hope that is how it is for you. Keep your chin up. Don't look at the things you can't do enjoy the things that you can!! Every morning you can get up and take a shower on your own and walk on your own two feet see with your own two eyes and talk is a good day. There is always someone out there who is not as lucky as you are and you will be able to see that if you look at things in the right light!! Gentle hugs and good luck. Jess
jessiC
Try not to beat yourself up for things that are not your fault. You can only do what you can do in a day. You have a full plate working everyday and come Friday I can't imagine how tired you are! I haven't worked in 4 years, but I used to LIVE for Fridays after working M-F as a Hospice nurse. It was tough. It got to where I couldn't work anymore. I beat myself up for 2 years with the "why me's" and "How come I didn't try harder to stay working" I was so run down I was hospitalized and still beat myself up! Be good to yourself. Find ways to rest, even if it is for an hour after work so that when your sons want to do something fun you will have the energy. Let the chores goes and make an easy supper. Find ways to make your life easier. Hire a housekeeper one day a week to do the tough stuff? It's all about finding balance and making time for you. With this disease you have to be a little selfish to be able to do the fun stuff. If that makes any sense! LOL Also, ask your doctor if there is anything that would help you perk up. Maybe you would qualify for B12 shots. I have a friend that takes sub lingual B12 and she has so much more energy now. If it is a pain issue, ask for something to help you be more comfortable. With this disease good communication with your doctor can result in the best "you" you can be. Be your own advocate to make life the best it can be. :) Cheryl
BeautifulDreamer
You do the best you can, and the rest you don't worry about. The one thing I have learned about Fibro is, you have to not push yourself. I make that mistake all the time and pay for it later. I want to do things with my 10 yr old all the time but I feel so guilty because there are times when I just don't have the energy. I know where you are coming from. You are in my thoughts and prayers, Love you, Becky
bobo
You take it one day at a time. Do little things with your kids. You maybe surprised. Your kids are going to remember the little things because mom was with them and was involed.
Take it easy. My thoughts are with you.
HUgs Nancy
barlochan
This is a tough time right now....coming to terms with a new diagnosis. Try not to worry too much about the things you can't do with your boys. What they'll remember most is just your presence and the time you spend really listening to them and showing total interest in them as people. It won't take much physical effort but it will make priceless memories for your boys. Your undivided attention is something they will always value.
Of course there are no promises out there about remission (I'm still hoping for one of my own) but my own niece with lupus (triggered by her last pregnancy, I think) went into complete remission for several years and continues to this day. It's always a possibility for you too. Keep the faith.
Jesse88
Hang in there it takes time to get in remission. I know sometimes when you dont feel well for awhile it feels like u never will again. Take care of yourself and heal yourself. Part of that is being kind to yourself emtionally and physically. Do what you can with kids all they need to know is that you love them.
jewels1692
Oh sweetie i feel for you. We have all been there. One day at a time is the best you can do & plenty of rest. I have not worked for a year now and i still feel guilt about that, but i know now that there was no way i could have kept going, i just couldn't. You will know when the time is right, you just will. It would be so hard to be working full time & have kids, hang in there....love & hugs, Deb
heick
HI LINDA... I KNOW HOW YOU FEEL... I AM NANNY TO A SET OF QUADS THAT WERE BORN IN JUNE, 12 WEEKS PREMATURE.....THEY ALSO HAVE AN ALMOST 2 YEAR OLD BROTHER...SOME DAYS ARE GOD AWFUL!!!!I ALSO HAVE A TEENGE DAUGHTER AND 2 GRAND MONSTERS...ONE IS 8 YRS OLD AND ONE IS 9 MONTHS OLD... THEY KEEP ME HOPPIN...HAHAHA. I AM THE KIND THAT WILL PUSH THROUGH THE PAIN NO MATTER WHAT UNTIL I CAN NO LONGER DO IT AND MY BODY WILL JUST QUIT...I HAVE FOUND ALOT OF THE TIME WHEN I FEEL THE WORST, DOING SOMETHING WITH THEM ANYHOW WILL TAKE MY MIND OFF THE PAIN...I KNOW THAT SOMEDAY I WILL HAVE TO QUIT WORKING BUT I JUST CANT GIVE IT UP YET... I WISH YOU LUCK....MY B12 SHOTS DO HELP ALOT...HUGS HELYN
Helyn
Dear Linda,
I have had fibro since 1989 my kids were 9and 7. I have spoke to them as adults and told them of my regrets of the things I couldnt do for them. They told me they didnt remember the things I couldnt do for/with them. They remembered the things I did for/with them!!! So dont beat your self up. They know what is important. and they will also as adults. My daughters told me they loved their lives as kids. There was much love and laughter. Even if I couldnt rollerskate or bike. That was important to them.(Only in my mind it was I guess) Their memories tell the truth
bethypoo007
Hi Linda, I sure know how you feel. Dealing with my kids was so hard. The two oldest were easier. But my youngest, my 12 year old just breaks my heart. I try to do things with her like painting and during the summer when I am not hurting so bad I have tried to teach her how to fish. But she is ADHD and bi-polar so she just can't seem to sit still for even 15 minutes. She wants to do jazz dancing and ballroom dancing which would be great if I was 25 again. I used to do all of that stuff when I was younger and she knows it from all of my trophies. But my body just won't let me do it any more and she doesn't seem to understand it. I do have my youngest daugter in ballroom dancing in her school so it is not like she is losing out, but she wants to do it with her mom. She asked me if she could get this dieases and I lied to her. I don't want her to worry about this while she is so young. I really feel for you about the Lupus diagones, I am scared to. I don't know what to expect if I do have both of these dieases. I do know with all the help I have here on DS and in my family and with Gods help I will make it through. We are all here for you!! Your Friend Traci((HUGS))XOXOXOXOXOXO's
pepsiaddict77
Hun,I am with you on the having to learn to live with this bloody FM thing,We have 5 kids hun from 6-15yrs and I miss going swimming,ice skating,cycling,as a family and I feel my 6 year old misses out on the trips to the beach and park.i do try to do other things that we can do together like snuggling up with a film,painting our nails,drawing and homework.It is an awful thing as I feel that the life I knew has been snatched away and I have been given this to deal with!!!! I am going to a chronic pain clinic which is ok but the people that run it don't have to live it huh!!??I hope that you find some ways to cope and that you find ways to cope and the help you need.Big hugs xxxx
juceey
I understand too! I have fibro (since before my kids were born, and b4 I even knew 4 sure what it was, as well as ME (referred to as CFS and the yuppie flu b4 that! So it was one or both b4 my kids were even a thought! haha
So what I have learned is that "we" are much harder on ourselves and perceive things to be much worse on them than what they really are! :/
All I know is that I have always been able to be there in the emotional sense at least, and I was home for them more times than not! (no latch-key kids...like I was)!!! :) So I hope that when they have their own kids, that I have done something right after all! :)
Just take it easy on yourself dear and things will work themselves out along the way!
plus...we are here...with all the love and encouragement one can want! :) HUGE HUGS
frndsrgldn
P.S., Thanks to you, and all the other friends I have here... i believe I will/have been pullingthru myself! :)
frndsrgldn
It will get better, I promise!
Nan
keepingon
Having read all these comments... I notice one most important thing.. endurance... one day at a time... and as much as I hate to say it... employment may become a thing of the past.. Fibromyalgia topped when I was 38....my doctors now call it advanced fibro... plus chronic heart failure... PTSD... overweight... pain daily 24/7 no more remmission...
I never knew what my problem was...just that I ached and my hands swelled up so bad I couldn't hold a hammer...(I was a carpentor) so I just ducttaped it to my hand and talk about odd looks i got from co-workers cause I had a hammer taped to my hand...I was like 26 at the time...
I just pushed thru what ever life throwed at me and the doctors were tellin me it was all in my head..
then it was over medicated...anti-depressants... muscle relaxers pain pills.. mostly Zoloft, and Motrin...
now I'm just watchin my blood pressure and cholestrol... and my heart... which is a muscle and I can feel it ache as it beats at times...
put my trust in God and
I'm just here for the LOve... DS is a wonderful place to find friends that understand and give support when we need it so much.. later russ
russ54
maybe you need a support group to help guide you with your health issues. The support groups here can be wonderful with very supportive people. Once you understand more about Lupus, you will understand ways to help alleviate the pain from it. Google "Lupus" online and you will find some useful information, but don't let any of it to get you down. You will feel better soon - with your pain and emotionally too. Take care....I will be thinking about you.
flip12flop
And.................ask your doctor all the questions you need answered. Make an appointment just for a consultation. You are entitled to know his feelings on this subject and his recommendations for treatment. I hope you have a good rheumatologist.
flip12flop
It took me 9 years to go into remission from fibro and chronic fatigue, but then I had 8 years of my life back. I was so productive and proud of myself. A year and a half ago I got sick again and now I'm just sorta doing what I can. It does of course hurt my feelings that I can't get a lot done, but it's something I have to live with. I'd rather not think that way but at times it's hard to help it. I agree with JessiC about the housework thing. I figure I'd rather do a million other things and my messy house is the last thing on my mind. My friends all know I'm a messy girl. :)
Good to meet you,
Elizabeth
PerhapsOneDay
hang in there I'm here and just accepted your friendship so Hang in there and nice meeting you
cewidder
you got a lot of great feed back. I too had to find a balance. I beat myself up for years and turned to drinking. I Thank God each day since I stopped drinking 10 years ago Jan. Today I love one day at a time and enjoy what i can. I thank God for the people he has put in my path and this site this past year. It helps to have a place to vent a place where others understand what we feel. I worked as a preschool teacher for a few years but had to leave due to my immune system got so weak i caught everything the kids got, I so miss it but then took a h=job as a crossing urard. I havent worked in 2 years now. Might try to go back in Jan or feb part time.Then again I might tey to SSD.
So please dont over do it, your sons will want you to take care of yourself! Housework will alwasy be there!
Well honey Enjoy those little kiddies!Read up on fibro and hopefully u have a Dr who can help.
Love, Prayers & Blessings Donna
ds13099
You have been given alot of great advice and suggestions. One of the hardest things I had to learn was how to pace myself. I was so used to cleaning the whole house in one day that it was an adjustment to say.."Ok, I will clean the kitchen today" knowing that could be all I was able to do. But in learning how to do that it has made a big difference. Sometimes I may have to sit and take a rest while cleaning a room, and that's ok, too. Just do what you can and rest when you need to.
One of the blessings of DS is there are so many amazing people on here. They are such a blessing to me...and they will be to you as well.
Love, hugs and prayers..Teresa
AzGal45
thinking about you and hoping that you get to feeling better soon... love and hugzzz... karen :)
ducktape
sweetie...I know that feeling...fortunately my girls are now 19 and 21 but my son is 14...alot of times i am homebound and dont drive and he feels rejected I feel so bad for him...I am not sure what advice to give you except do the best you can, dont overdo yourself and I will pray you find a mentor maybe to help out with the boys.....hugs
NYyankeedeb
WELL I KNOW ONE THING YOU HVE LOTS OF FRIENDS. i NEVER HAVE READ SOMEONES JOURNAL THAT HAD SO MANY COMMENTS,SO THATS GOOD YOU HAVE ALOT OF SUPPORT AND THATS WHAT WE ALL NEED, YOUR BLESSED,TAKE ONE DAY AT A TIME AND DON'T OVER DUE AND YOUR KIDS WILL REMEMBER ANY LITTLE THING YOU DO WITH THEM,I RAISED FOUR WITH ME HAVING FIBRO AND THEY UNDERSTOOD AND WHEN I DID DO SOMETHING WITH THEM THEY WERE THRILLED.HANG IN THERE AND WERE ALL HERE FOR YOU!!
uranangel64
I got through the same type of feelings with my 2 year old. I can barely keep up with when she runs!! I spend many days beating myself up about how I don't any energy to do fun things with her. And I just got diagnosed with Lupus and Fibro. Sucks.
Hashithing
Take care and good luck! Everyone already said everything, so I give you my support! And it does get under control the depression, I mean. Once that is controlled, you can begin to work on the rest. Day by day! butterflyzrfree :-)
butterflyzrfree