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kkgadro
11-28-2005, 12:46 PM
Hi! Everyone! When is time to to say I have had enough? I am so tired now. I cant rest because I have 4 kids and divorced. I have to stop. I cant do it any more. I have had lupus for over 17yrs. The last 4 yrs have been the worst. I dont think I can go to work any more. My body has slowed down so much and is still getting worse. Based on the way I feel, I dont think I will be around much longer. The pain is beyond belief!!!!!! When I wake up in the morning I am frozen stiff. I mean I cant move, everything is almost paralyzed. I cant sleep at night from the pain in my legs, hip, arms and neck. I have trouble walking and standing and sitting. I am so weak. I cant even open a bottle of coke. It takes everything I have to open it. It hurts to turn the steering wheel on the car. My joints dislocate. I couldnt get off or on the toilet, thanks to advise from a wonderful person on this website, I bought a potty seat and it works great.If I give up I will lose my house, my pets, and possibly my kids. You know how ex's can be. The only thing that pushes me to continue is the kids. Am I at the end of lupus. How do you know when the end is near? I have been bleeding from the kidneys for almost 3yrs. My hair is falling out as well as my teeth. I look so old now. I just want to lay down forever. (it sounds like it would feel good. I have only missed one day of work. My Mom says you can be just as sick at work as at home. Being home doesnt make it better. I just cant do it another day. Disability.......what a joke! I am tired of trying. I have minimal child support and I bring home $284.00 a week. Try raising 4 kids on that. I dont have a real Dr because I have no insurance and cant afford it. I go to the free clinic. They mostly issue meds and thats it. As you can see they have not done much for the blood in the urine. They said it is part of lupus. Whatever!! Well thats my gripe today. Again......How do you know when the end is near when you have lupus? My great Grandma died in her late 30's and my Grandma died in her 50's from lupus. How do you know?

Saysusie
11-29-2005, 08:56 AM
Hello KKgadro:
First, let me give you a loving, understanding and heartfelt hug. Reading you post, I wanted to be with you so badly just so that I could reach out and touch you and hold you so that you wouldn't feel so alone. But, this is the best I can do and I truly hope that I can convey how much my heart is with you right now!
I don't know if we can know when we are at the end. I know that when the end came for my daughter (who, like you, was suffering terribly), the doctor's said that she did not fight for her life at all. We have to assume that she was tired and ready to go. But, when we go is not our decision to make and unlike you, she had no children who were left to live their life without their mother. She had a mommy who was left to live her life without her daughter, and a daddy, and a brother, and a husband and friends and family who all feel the emptiness where she once was.
I know how you must feel because I saw and heard it with my daughter, so I truly, truly understand your state of mind right now. But, I want to say that you are cherished by so many, and so important to so many (especially your children) and you have touched lives that you are not even aware of. You are valued, you truly matter - there is an important reason why you are here. Please try to hold on to that knowledge - because it is the truth!
I know how unfair and difficult trying to get disability can be (been there - done that!). Have you asked your employer about job accommodation? Perhaps you can work from home and be able to take recuperative rest periods when you need them. Maybe you can work from home a few days and go into work a few days. I have found that for most of us, when we are up front with our employers and explain to them that we want to work, we just need their help in assisting us to work, most employers will find ways to accommodate our requests.
Is your family near? Is there anyone who can come and help you with the children once in a while? If your family is a supportive one, now is the time to call on them for help (here again, you might be pleasently surprised by how willing they are to help you).
Is there a Lupus foundation near you? Call them and ask them if they can refer you to some supportive services to help you.
Are you eligible for medi-cal? Food stamps? If so, that might ease some of your burdens of trying to feed and care for yourself and your children on a limited income.
Try contacting your chamber of commerce to find out what non-profit organizations exist in your area that are set up to help with health care needs, child care needs, counseling etc. Non Profit organizations offer services free of charge and are generally funded by corporations, cities etc so that they can provide their services for free.
Let me know how these suggestions work for you. Remember, we are here for you anytime that you need us and we want to help you in any way that we can!!
Remember - you are valuable and you are loved!

Peace and Blessings
Saysusie

kkgadro
11-29-2005, 10:25 AM
I wish my family was more supportive. I work for my Mother. Working from home is not an option. Taking days off means less pay and at $250ish a week a cut back would be devastating. Lupus runs in my family. My Grandmother and her Mother died from lupus. I guess my family is tired of dealing with the aches and pain. I am afraid to stress to my Mother that this it. I have had it. SHe cant do any thing to help any way. So I guess it does not matter. For example....she called this morning to see how I was feeling because we need to hang Christmas decorations on her Bed and Breakfast. I was throwing up blood and had blood in my stool yesterday and I think in the urine ( very dark color) Well guess what we will be hanging decorations. She says she has lupus too and that she is as sick as I am, but she will not show me her test results nor does she take meds for it. I dont think she realizes how sick I am. I try not to show it because she wants me to move in with her and lose my house. I will have to get rid of my childrens pets and toys and my furniture that I worked 2 to 3 jobs to have. If I live with her she expects me to work my job and take care of her b and b. That sounds like a lot more work to me. I will have no rest ( what little I have now) I live in a small town and we do not have non profit orgs to help. I am just over the income limit for state help, yet I can not pay the $5oo mortgage, lights, water, etc... I am used to working 2 jobs to support my family, now I cant hold on to one job. This sux!!! I am 41 yrs old and do not want to lose everything I worked for. And believe me it is not much! Thank you for your kind words. They have touched me deeply. I wish I did not have lupus! Everyone is looking for a cure, but when it comes who will be able to afford it?What about keeping the poor alive until there is a cure? Most literature talks about lupus survival is based on quality of medical care. Well what about people like me? Where do we fall in the survival statistics? I am angry today because I never thought my life would turn out like this. I thought when I first was diagnosed that I would always be ok but with a little arthritis. Suprise! Thank you again! Love for you always!

Ariel
11-29-2005, 10:35 AM
Honey,

If you are bleeding internally you need to go to the hospital. If your mother can't help, call Social Services and see what they have to offer.

You need to be in the hospital right now.

I can help you find things that will make driving easier, etc. but you need to go to the ER NOW!

hatlady
11-29-2005, 10:42 AM
I agree with Ariel, sweety, you need to get to the hospital - if you have blood in your stool and urine, and are vomiting, you need medical help NOW.

Listen to Saysusie, she has so much experience with this, and understands how families can play a part in both the issues and the remedies.

Have you seriously talked to you mother, does she know what your symptoms are? Has she ever visited www.butyoudon'tlooksick.com and read "the spoon theory?" that may help you start a discussion.

Sweety, if you can start communicating better with your mom, possibly a move will be what helps you heal and get back on your feet? You need to reduce your stress right now - and money problems sound like they are addign to it. Talk to your employer about accommodations as well, like Saysusie suggested.

Many hugs, dear. Now, go to the hospital - NOW!

SoleSinger
11-29-2005, 10:47 AM
IT GETS WORSE?????? I've only been dealing with this for a very short time compared to most of you and there are days ALREADY that I feel like giving up... Days that I feel like I'm at deaths door... And some of those days I know I'd fight it if it came down to that, but somedays, I feel like succumbing... It gets worse than this??? Rewind! I need to read that contract I signed a LITTLE more carefully...

kkgadro
11-29-2005, 10:47 AM
They bleeding stopped last night. Well as far as throwing up. I have a little in the stool. Not bad. Our hospital ER is only to make sure you are not dieing and they refer you to your Dr. I have put in an appointment at the free clinic. ( they handle my care). They said they can see me in Jan some time and they will call with an appointment. I am fighting with the hospital over my current bill. (quite high). When I have an emergency the free clinic refers me to ER. What a vicious cycle. Just to let you know I am at work. Can't miss a day! I dont want to lose my job.

Cassady
11-29-2005, 02:03 PM
kkgadro
Just wanted to let you know you are in my prayers. As saysusie says you have touched so many people that you are not even aware of. Reading your post went straight to my heart. You have touched me and so many others. It sounds like you work very hard and have so much love for those around you. You must be a very strong person to do all that. I also wish that I was close by to help out. Please take saysusie advise and check on some of the leads she gave you. You will be in my prayers.
we are all here for you.

kkgadro
11-29-2005, 02:15 PM
Thank you so much!!!!!!!! I love you all!!!

Mitch
11-29-2005, 02:42 PM
Hi kkgadro! Reading your post was an eyeopener to me. I will rethink things when I feel I'M having a bad day. As I was reading it, it occurred to me that, if you belong to a church, maybe you can enlist their help (or any local church, for that matter.) What made me think of it is, in my small town we have a small church that does Sooo much community service. A mother from my daughter's class had triplets 4 years ago, and she had round the clock help from the "elders". They fed, changed, bathed, rocked, did laundry, brought food - basically everything for her for the first few months!) I think it's a double-blessing because you'll be helped, and they need to feel needed. Sometimes, just not worrying about dinner once in a while takes a lot of stress off, and maybe just an occassional baby-sitting or whatever else you need and feel comfortable "letting go of" (I say that because I'm a control freak to some degree and the thought of someone else doing "stuff" for me freaks me out) But there ARE some things I would accept help with like the time consuming tasks, folding laundry, etc... It's your health that needs tending to now, ask around for some info - maybe a friend can help inqiuire on your behalf. I bring this up because I have personally worked at this church's food pantry in the past. To me, that's what it's all about. My OWN church doesn't do close to what this tiny little church does - and shame on them! They have a great respect for the older members of this church, and I truly believe they do this out of the goodness of their heart. A friend also used to receive baby clothes from them since she divorced shortly after her first child. Remember, it's not a hand out, but a hand up!! Good luck, sorry this was so long!

Mitch
s

Saysusie
12-01-2005, 09:56 AM
Mitch;
Thank you so much for suggesting the faith based organizations, I was just about to do that when I read your posts.
KKGADRO:
All churches are 501(C)(3) organizations (in other words, non profit organizations) and, like Mitch said, they generally always have programs to help community members in need (Sometimes, this help even includes helping to pay for medical costs). Since you are not getting the support you need from your mother (who sounds like she may be in remission or may have a different form of Lupus than yours) who is also your employer, then it is important that you seek help from others. And believe me, if you look, you will find that there are so many who are willing to help you.
I understand the crazy merry-go-round with free clinics and emergency rooms, but January is much too far away to INSIST that someone look at and treat your internal bleeding. That could be a sign of something serious and I want you to please step up and demand that someone see you about it and treat it (not just send you home to wait to see what happens next) now!!!
As you have seen, we are here to help you in any way that we can and we care about you. I will continue to offer suggestions to help you as long as you need them. Let me know if you have success with the churches. Like Mitch said, you do not have to be a member of the church to ask them for assistance!
Please stay in touch and let us know how things are progressings

Peace and Blessings
Saysusie

catlady4520
12-01-2005, 11:06 PM
KKGADRO

I understand how you feel! It's been an extremely rough year for me as well...started having seizures in April and by the time my rheumy got back from vacation, she ran tons of tests and found out I have lupus of the brain. The dizziness and headaches were better with the help of chemo but now they are starting to come back.

Don't give up especially because of your kids. I would, however, make sure you have a will and a plan in place for your kids just in case. You said working at home is not an option...I know of a virtual call center where you can take calls at home...it's called Alpine Access based out of Golden Colo. They work for a variety of clients including JCrew and Videoprofessor. I'm considering doing that part time and try to move up in case my lupus gets alot worse. Right now I'm a call center sup and have to be on my feet alot. It's killing my joints although I do make a decent income w/benefits.

I see alot of our members here on the boards have given some great suggestions. Take care of yourself and get the extra help you need. I lost my mom a few yrs ago all because she wouldn't spend the money necessary to go back to her heart dr. I miss her terribly although I'm already grown and have a teenage son. I would give anything to be able to talk to her again.

Hang in there...you're in my prayers!

tatiana
12-02-2005, 01:23 PM
How are you feeling today? I am so sorry that you are going through all of this physical and emotional pain. It brings me to tears to know that you are having such a hard time. Please hang in there, and know that there are many of us who are here for you when you need to vent, or need advice. You are in our thoughts, pleae dont give up. Please let us know how you are doing, if you have been able to visit a local church or sought other kind of help. My thoughts are with you,
Tatiana

shanniefly
12-09-2005, 10:42 PM
I have great feelings of guilt and admirration after reading this thread. KK Please hang in there and know that there are people that support you!!! I agree totally with all the ideas already given...especially the spoon website, the faith based org. and health and human services!!! Just remember that we all love and care for you!!!

clogan74
12-11-2005, 03:03 AM
There has been so much wonderful advise here for you. I read your post and too wished i could reach out and hold you, hug you, just be there for and let you know you are not alone.
One other suggestion you might try is I have been calling ALL my bills, past due or not letting them know what's going on. Some of them have in house assistance or can defer bills a month or two, especially now during the winter months.
For example, my PCP has an internal assistance program that they explained not only may cover doctor bills but other bills too, like ulitities etc. Apply for disability, approval can take months, but goes retro active to your application date, or that's what my state explained to me. The gal I spoke to at my local disability office even gave me names and numbers of other services that I hadn't even thought of. Although I am not associated with any particular religious group, my mother is and her religous group has offered to watch my kids so I can rest, go to the grocery store for me if needed and get me contacts of other services that may help my family. So there is some truth to what others have said, even if you arent affiliated with a specific religious group, they are still more than willing to help you.
I know asking for help is hard, it seems so many of us have the same issue, but at a time like this, it never hurts to ask. If you can get some assistance from anywhere, that's one less thing to worry about. It's worth asking around. We all need help sometimes so we can help others later :)
Please keep us posted, this is a great place, please don't give up, you truly are not alone. email me or IM me anytime!

Cindy
mother of two, 19 mos and 5 mos
living with Lupus 21 years and counting

shan3
12-23-2005, 11:25 PM
I was just reading about you. I am so sorry for what you are going through. I hope things are starting to look up for you. Please take the advice of getting help from a church. My church has helped me so much. I wish I lived by you so I could help you. Don't give up your children need you. You are in my thoughts and prayers. My mother also does not understand what I am going through and it hurts so much. Please hang in there.

SassySingleMa
12-30-2005, 02:04 PM
I'm totally in tears right now. We love you and hope that you can find more hope in whatever it is that you believe in. We have to survive for our kids that need us!!!!!