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Old 11-11-2010, 05:32 PM   #1
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New to thiss! =)

hiii i'm new too this! my name is bianca. im a nineteen year old mom of a 3 1/2 year old little boy. i also have lupus (SLE), RA, Anemia, depression and probaly a bunch of other things they havent found. i also feel that i have OCD and i havent talked to my doctor about it, so if anyone can help me cope tell me what you do on days where you feel like just dying? i need help coping with all of my illnesses,i was just diagnosed january 2010. Also im a mom so i deal with a hyper active little one i just cant deal with the pain, so if anyone one have suggestions or methods of coping with everything help! i would appreciate it very muchhh =)

Last edited by FOREVERxYOURSx; 11-12-2010 at 06:28 AM.

 
Old 11-13-2010, 05:24 AM   #2
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Re: New to thiss! =)

Hi, Bianca. Greetings & welcome! Is your lupus under good control? Have your meds kicked in? As for energy, I've come to believe that no matter what I do, there will be days I just won't have much. If I burn the candle at both ends, I'll pay for it later. When I keep a regular schedule, get proper sleep, eat right, etc., I do better. But LIFE intrudes with unexpected things, doesn't it?!

I'd encourage you to read up on lupus & RA. Have you seen the sticky posts (permanent info posts) at the top of the thread list? There are reco's for books you could borrow at no cost from your library. Also, you could seek a local support group, to meet people in person. With luck, you could make new friends and perhaps take turns backing each other up on bad days.

I've learned to say "NO!" when I'm feeling iffy. With your little one, I know you can't say NO to your responsibilities to him. But if others are demanding too much, hopefully you can hold them at bay.

I'm photosensitive, so I have to avoid & protect against sun. I take Advil in addition to my lupus med. You could ask your dr. to recommend something further to help you with pain. I'm sorry you have so much on your plate. But I'm glad you found us, because you'll meet many thoughtful, warm people; and we're always available to keep you company. Bye for now, with my very best wishes, Vee

P.S. Sounds harsh, but I try to avoid sick people. This fall, a virus is going around where I live, and I already had one big episode. I got a flu shot---did you ask your dr. about that? Also, I carry Purel in my handbag & use it before I eat, after handling menus & the like in restaurants, after grocery shopping, etc.

Last edited by VeeJ; 11-13-2010 at 05:27 AM. Reason: added P.S.

 
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Old 11-13-2010, 12:32 PM   #3
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Re: New to thiss! =)

Hi! thank you soo much for replying =) well as for my lupus no it's not completly under controlled, my meds were working and i was fine for two or three months and now all of a sudden i've been in so much pain i wake up at all hours of the night and just cry cause of the pain! my fingers and knees are the absolute worse and i am extremely tired sometimes i'll just be sitting there and just pass out it really bad especially with a three year old, he's learning that mommy has days where she's sick so he actually tryes to help as much as he can but he's still a kid soo he gets a little frustrated when i can't run around with him. i got my flu shot last month and i carry hand sanitizer every where i go. i've talked to my doctors and i no longer can take anything with ibuprofen in it because i had an episode where they thought the lupus were affecting my kidneys. i absolutly love this site and this is exactly what i needed to find and im so thankful i found this website! hope to talk soon byee!

 
Old 11-13-2010, 09:48 PM   #4
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Re: New to thiss! =)

So sorry to hear you have so many problems at such a young age. Being a parent is hard enough without having chronic illnesses.

I have Lupus and Fibromyalgia and am bringing up two sons who are teens, now. It has been a challenge with work, being sick, and trying to be a good wife and mother. I finally had to go on disability. It helps if you have a good support system- mother, grandmother, babysitter, etc. to lean on when you need to.

The most important think that I can suggest is for you to remember to take care of yourself first, so you can take care of your child. And don't be afraid to ask for help. I'm curious as to what symptoms you have with your OCD. How does it present? That can make things even more complicated.

Learn as much as you can about Lupus- read, read, read and ask questions of your doctors. It works better when you are an active member of your health care team.
Check this site frequently and ask specific questions. Don't worry that it has been asked before- there are always new people who are wondering the same thing.
Good Luck,

 
Old 11-14-2010, 08:30 AM   #5
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Re: New to thiss! =)

yeah, being a parent is very hard and i do it all alone the only person i have is my mother. My sons father is in the picture but he is so lazy he does nothing for my child or me but that's a whole another thing .. with my ocd the things i do is when i lock my doors i have to keep checking about 5 times in order to feel that it is lock and noone will come in, when i wake up in the morning i chose a room and i rearrage everything and everything has its place. theres alot more things but i try and controll it i try and ignore it as much as i can but when i get super depressed it spirals out of control and thats when i have to make sure my light switches are going the same way or the clock on the microwave is at zero it pretty bad. i also feel super anxious at all time theres this feeling in my stomach that i always feel something bad is going to happen. its pretty sad i live my life this way =/

How hard was it for you to get disability because i was denied even though my doctors said that i should'nt work. how is your lupus at the moment? i've been trying to take care of myself but i feel like no matter what i do the lupus is controlling my whole life. i never had any problems then when i got sick i started getting all these other things i don't understand why this has to happen to me!

 
Old 11-14-2010, 09:17 PM   #6
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Re: New to thiss! =)

I totally hear what you're saying about taking care of young kids and trying to stay afloat with chronic illness. My poor kids have just learned that mommy needs her nap...it's frustrating but a necessity. Does your little guy still take naps? Do yo get any respite from being the caretaker to take care of yourself? It is so important!

I was curious, too, about disability. If anyone out there could comment on the process (I guess to put it bluntly, how bad off does one have to be in order to qualify) I'd be interested learn from you all.

Hang in there and let us know how we can help.

Michelle in CA

 
Old 11-16-2010, 05:46 PM   #7
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Re: New to thiss! =)

I got SSI disability about 8 years back, before I was even diagnosed with MCTD, I had a fibromyalgia diagnosis but I honestly think the reason I got it so easy, was due to my depression and back at that time was suicidal. I don't think they based it at all on my physical problems. I was approved in a month. There was no way I could hold down a job being so tired. I am no one to give advice on coping, I have done a horrible job at that, but I think the best way of getting through it, would be doing what it takes to feel as okay as you possibly can. So if you can't take Ibuprofen, which that is really harsh stuff, as it can cause ulcers & inflammation (so it did to me), why can't they put you on something else like Darvocet, Lortab, Ultram, muscle relaxants, or something, instead of you suffering like you are doing? Pain makes you tired. Make them do something for you to help with that.

 
Old 11-17-2010, 07:54 AM   #8
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Re: New to thiss! =)

Quote:
Originally Posted by FOREVERxYOURSx View Post
yeah, being a parent is very hard and i do it all alone the only person i have is my mother. My sons father is in the picture but he is so lazy he does nothing for my child or me but that's a whole another thing .. with my ocd the things i do is when i lock my doors i have to keep checking about 5 times in order to feel that it is lock and noone will come in, when i wake up in the morning i chose a room and i rearrage everything and everything has its place. theres alot more things but i try and controll it i try and ignore it as much as i can but when i get super depressed it spirals out of control and thats when i have to make sure my light switches are going the same way or the clock on the microwave is at zero it pretty bad. i also feel super anxious at all time theres this feeling in my stomach that i always feel something bad is going to happen. its pretty sad i live my life this way =/

How hard was it for you to get disability because i was denied even though my doctors said that i should'nt work. how is your lupus at the moment? i've been trying to take care of myself but i feel like no matter what i do the lupus is controlling my whole life. i never had any problems then when i got sick i started getting all these other things i don't understand why this has to happen to me!
I'm so sorry you have to deal with so much. Stress will definitely make things worse on all accounts. It was recommended that I take a stress reduction class, and it has been a God-send. Maybe that would help you, too. It was no cost, but they asked for donations according to your ability to pay.

I made some great friends and have a support system with them as well as having a tool to help keep my reactions to stress under some control. It involves training yourself to meditate and relax in almost any situation so that your response is calm and doesn't illicit a fight/ flight response to things. I have a lot to learn, and it may take years to perfect, but I use the mindful breathing to relax my muscles when I tense up. My Fibromyalgia is flaring right now, so the muscle relaxation is helpful.

My Lupus has been quite for about 5 years so far. I had a brain stem stroke and was put on high doses of Prednisone. That seemed to shock the Lupus into a good remission. I got disability because of my Fibro and Lupus combination. I was denied the first time, and got a lawyer who submitted my appeal. I actually fired the lawyer after awhile because they weren't doing anything, and I got the approval without having to give the lawyer their percentage. If I were you, I would get a lawyer and appeal. They say that everyone pretty much is denied the first time.

I have had periods of feeling better, and thought about going back to work, and then I get sick again. It makes it hard to have such limited funds from Social Security. They haven't given us a cost of living raise in several years now. So, with the divorce coming up, I will need a better income to be able to provide a home for my children, even with any child support. I can't afford the mortgage payments without another income, so we will most likely loose the house. I'm looking for some type of job I can do at home, when I feel up to it. But, I doubt any lending institution would give me a loan based on part- time occasional work.

I'm wondering whether you are seeing a doctor concerning your OCD. I don't know if there are medications you can take, but they might help you, especially when you are stressed. My soon to be ex-husband and his mother have ADHD with OCD tendencies, so I understand some of what you are going through. I am watching my youngest son closely because I can see some signs that he also has these problems. So far, it hasn't been hurting his grades or his socializing, but it could at some point. I have looked into having him evaluated, but my insurance does not cover this very well, and I am not in a really good position financially right now. We might move out of town when the divorce is finalized, so I don't want him to have to change doctors in midstream.

I am not an expert, but have had Lupus for many years, so feel free to ask questions. I will be checking the boards. This is a good place to vent, too. I usually flare after an illness or with stress. You can help yourself a great deal by taking care to eat healthily, get enough sleep, be sure to follow your medication regime, and stay away from sick people. Add in a little stress reduction, and hopefully you will keep everything under control.
Take Care,

Last edited by Sunsetnan; 11-17-2010 at 08:04 AM. Reason: Added

 
Old 11-17-2010, 12:14 PM   #9
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Re: New to thiss! =)

Quote:
Originally Posted by neveragain444 View Post
I got SSI disability about 8 years back, before I was even diagnosed with MCTD, I had a fibromyalgia diagnosis but I honestly think the reason I got it so easy, was due to my depression and back at that time was suicidal. I don't think they based it at all on my physical problems. I was approved in a month. There was no way I could hold down a job being so tired. I am no one to give advice on coping, I have done a horrible job at that, but I think the best way of getting through it, would be doing what it takes to feel as okay as you possibly can. So if you can't take Ibuprofen, which that is really harsh stuff, as it can cause ulcers & inflammation (so it did to me), why can't they put you on something else like Darvocet, Lortab, Ultram, muscle relaxants, or something, instead of you suffering like you are doing? Pain makes you tired. Make them do something for you to help with that.

well my depression is starting to get alot worse i've had to different anti depressants: cymbalta and lexapro the cymabaltas were horrible they made me anxious and i wasn't able to sleep i would have to get up and randonmly in a deep sleep get up and check the house and my son to make sure everything was okay so i got off that and the lexapro i am on 20 and they seem to be working alot better but i need a higher dose i think i just feel down its so hard to explain so im hoping to get something better. The only thing they have me on are Opanas 10 mgs four times a day and they use to work but now the pain has gotten 10x worse so i take about 6 a day which is horrible because i am going to run short this month so its definitly going to be a rough month, do you know if they can give me something else with the opanas? i cant take percs, vicoden or dervacet they do nothing or they make me very sick to the stomach, i think i am going to talk to my dr about muscle relaxers or something because i definitly need something more this pain is unbearable honestly

 
Old 11-17-2010, 12:25 PM   #10
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Re: New to thiss! =)

Quote:
Originally Posted by Sunsetnan View Post
I'm so sorry you have to deal with so much. Stress will definitely make things worse on all accounts. It was recommended that I take a stress reduction class, and it has been a God-send. Maybe that would help you, too. It was no cost, but they asked for donations according to your ability to pay.

I made some great friends and have a support system with them as well as having a tool to help keep my reactions to stress under some control. It involves training yourself to meditate and relax in almost any situation so that your response is calm and doesn't illicit a fight/ flight response to things. I have a lot to learn, and it may take years to perfect, but I use the mindful breathing to relax my muscles when I tense up. My Fibromyalgia is flaring right now, so the muscle relaxation is helpful.

My Lupus has been quite for about 5 years so far. I had a brain stem stroke and was put on high doses of Prednisone. That seemed to shock the Lupus into a good remission. I got disability because of my Fibro and Lupus combination. I was denied the first time, and got a lawyer who submitted my appeal. I actually fired the lawyer after awhile because they weren't doing anything, and I got the approval without having to give the lawyer their percentage. If I were you, I would get a lawyer and appeal. They say that everyone pretty much is denied the first time.

I have had periods of feeling better, and thought about going back to work, and then I get sick again. It makes it hard to have such limited funds from Social Security. They haven't given us a cost of living raise in several years now. So, with the divorce coming up, I will need a better income to be able to provide a home for my children, even with any child support. I can't afford the mortgage payments without another income, so we will most likely loose the house. I'm looking for some type of job I can do at home, when I feel up to it. But, I doubt any lending institution would give me a loan based on part- time occasional work.

I'm wondering whether you are seeing a doctor concerning your OCD. I don't know if there are medications you can take, but they might help you, especially when you are stressed. My soon to be ex-husband and his mother have ADHD with OCD tendencies, so I understand some of what you are going through. I am watching my youngest son closely because I can see some signs that he also has these problems. So far, it hasn't been hurting his grades or his socializing, but it could at some point. I have looked into having him evaluated, but my insurance does not cover this very well, and I am not in a really good position financially right now. We might move out of town when the divorce is finalized, so I don't want him to have to change doctors in midstream.

I am not an expert, but have had Lupus for many years, so feel free to ask questions. I will be checking the boards. This is a good place to vent, too. I usually flare after an illness or with stress. You can help yourself a great deal by taking care to eat healthily, get enough sleep, be sure to follow your medication regime, and stay away from sick people. Add in a little stress reduction, and hopefully you will keep everything under control.
Take Care,


OMG where do you find these classes what are they called? i really need something because with all the stress i go through on a daily basis i need something to help me. it seems like you have a lot to deal with yourself so these classes must teach you something since you're coping with everything. i want to talk to my doctor about my OCD because my best friend's mother has OCD extremely bad and they give her some kind of meds for it but everytime i go to my doctor i literally forget everything its like i have a brain fart or something it has been happening alot sometimes i can't even remember if i took my meds for the day! do you think this is the lupus or the meds or am i just going insane? . i do have a lawyer but ive called him about three times and he's never in the office and then he never even returns my calls! so i think i am going to start looking for a new lawyer someone who iss actually going to help me! i really wish i can go back to work but i know that would just be a bad idea i cant do anything because my fingers swell up and they hurt i cant do anything i cant stand for long periods of time because my knees and back start to kill me, and a bunch more that just prohibites me from doing anything, its just so stressful because i have bills to pay i have things i need to buy and i cant because i have nothing.. .

 
Old 11-19-2010, 06:30 PM   #11
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Re: New to thiss! =)

The classes I took were called Mindfulness Based Stress Reduction and it's based on a program given at the University of Massachusetts Medical Center taught by Jon Kabat-Zinn, PhD. He based this program on ancient meditation techniques that uses the wisdom of your body and mind to face stress, pain, and illness. You might look into a program in your area. If there isn't one, you can check and see if your library or book store has the book that was used for the course. It's called, "Full Catastrophe Living." There are also CD's that go through the mediation techniques and relaxation that were very helpful.

I have the brain fog- thing going, too. I have to make lists all the time. My doctor probably thinks that I'm overly organized, but it's because I forget things to ask and regret it later. I have to use a medication container that has my morning and evening pills laid out for the week. Otherwise, I can't remember if I took my medicine or not. If in doubt, I can always check that day's little box and see.

It's really frustrating when the lawyer's office doesn't call you back. I had issues with that, and that was why I ended up firing them. Their loss for ignoring me. Hopefully, you'll hear from them soon. It seems to take forever, and it's hard to be patient when bills are due. I remember a relative who declared bankruptcy. She gave the phone number of her lawyer to the bill collectors who kept calling. That was one way to get things going.
I hope your situation gets better soon,

 
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