Being a Mom who is SICK, SINGLE, AND POOR

General
1

I am very proud of the middle aged adults that my children have become. Raising them was difficult because I was a single mom with lupus working to keep a roof over their heads, clothes on their backs, and food in their bellies. I have no guilt about how I raised them because short of putting myself into an early grave, I gave them everything that I had to give. They definitely have many of my attitudes and values. They are hardworking, lifelong learners, reliable and dependable.

This morning I wondered if any of you are trying to be good Moms, while fighting lupus, and being responsible for dealing with that other wolf who shows up at the door demanding money. What special issues do you face? How are you managing? Do you find yourself being disparaged by those with more privilege? Do the ones with better health, spouses, and/or money stand in critical judgement of the choices you are forced to make? How do you stand them down, back them up, and maintain your self confidence and esteem?

2

I was a single mother whose lupus started showing (although I didn't realize at the time) at the same time that I had a back injury at work and a divorce. Divorce...best thing EVER!!! Back, not so much!!!

I have 2 boys, 6 years apart from two marriages. The first one was before I was ill and injured and after divorcing his father it was he and I. We didn't have much, but made do. He is absolutely the apple of my eye. His father was never disparaging and although we didn't always agree, we did make certain that he had contact with family on both sides. My son has worked since 15 and is a supervisor at a security firm for local private hospitals in the area at 24. He is loving, supportive (emotionally) and when my current husband has to travel for work he checks in and stays over or whatever I need. Just today for no reason we talked for almost 2 hours.

Then the second, who is now 18. His father made certain that he cemented in his head that I "left" him (although, again I was going through several surgeries, rehab, etc.) not to mention the effects of what I now know was lupus. And, he made certain to make sure I felt I "owed" him for giving birth to him. And I did feel that way and tried to "make up" for not being in the same house although I was in the same crappy town. I didn't want to leave my son although it was physically killing me. By the time he hit 12 he was so abusive and demanding that I took him to counseling. Unfortunately, after being undermined by my ex at every turn I know longer have any relationship with my son.

I suppose what I am getting at is that, knowing then what I know now, I would have taken care of myself first. Something I have tragically learned from this is that if you don't then you are not very good to anyone, and can feel a failure and stress is an absolute killer.

I lost everything financially during that time, but he always wanted more, more, more. I finally got back to work, but for only a short time before the lupus kicked my butt again and I have been down off and on for the last several years.

So, one living frugally but lovingly has turned out strong and independent and just wonderful.

The other, given until there was nothing more to give, will likely end up in a not very nice place in life. Sadly, most of my family have cut ties to him as well because of his abusive nature.

I can look at them and know that I did what I thought was best at the time. One had a reasonable understanding, though not financially supportive father.

The other has a father whose only interest is money and believes that because my current husband has a good job, somehow he is entitled to something. I think this is the worst lesson that he could have ever taught my son, but physically I was in no condition to prevent it, without even knowing why I was ill.

I taught my sons to live within their means. If you are warm, have food, and mostly a loving family...everything else will work out. I did this by example, however they can take or not take what they will from what you can teach them.

Thankfully, the only one that ever stood in judgment was my ex and by extension my younger son, and quite frankly it is them that I feel sorry for.

I no longer allow them to take space in my mind. Not a lot of space there and what is left is open only for the positive.

As to better health, it's surprising how many people will say "I know so and so's aunt's cousin's half-uncle" or whoever has lupus and they still... I just explain that it affects everyone differently and even here with over 2,000 members I would bet that we would be hard pressed to find any 2 of us with the exact same symptoms. That is just the nature of the disease.

What a great subject to bring up Ann.

Thanks,

DeAnne

3

This is a wonderful discussion Ann!

I was fortunate that my kids were Seniors in High School when I was diagnosed. I regretted that I wasn't able to do more for my son's show choir, volunteering at practices and such after my foot surgery. But, I was at every competition, in the front row cheering him on. I would see him come out on stage, and make eye contact with me once and that was it. He had to see me then he was ok. Of course, he would always hear me, I made sure of that.....

My children are both strong, and finding their way in life. They are both continuing their education, and learning to pay their bills. They don't always make the choices for themselves that I would choose for them, but I know that they have both picked up where I left off. And I am here for them, not making judgment calls, just encouraging them.

4

Good morning all

We have 4 kids, 3 that you can always count on and one addict. They are all adults, the youngest is 41. I think the kids that grow up in stuggeling families have more of a sense of responsibility, for the most part. I wasn't diagnosed til last year and I am "really" old. I don't have a friend or family member that doubts how I feel and what my limitations are. Try to stay as stress free as possible. I am lucky that I don't have any stress in my life.

Cindy

5

I so well know it! I am a single mother that gets no child support from my ex, have a 14 year old son. I am a cub master to a group of 15 to 20 boys. I work full time, my son is involved in boy scouts and plays soccer. My schedule is on overload constantly. I know I don't get enough rest, but I don't want him or me to miss out on life.

6

I love this question - and have bookmarked it to go back and read the answers that keep coming in. I have 2 girls ages 10 and 14, and I got sick about 7 years ago, first with lyme disease that then triggered auto immune. My husband is supportive of my illness but of course it affects all of us, and I want to set up some counseling to help him work through some of his issues around my illness. He recently accused me during an argument that I give everything I have to my job and my kids - and nothing to him, which is true. I have to keep working for financial reasons, but also love my job - it makes me feel like I matter to the world. And my kids- if I could only give my energy to one thing it would be for them. However, the reality is that I am often so tired or sick in bed- when my kids get home from school that is where they go to look for me. They come and sit in my bed with me and tell me about their day. I feel so much love for them when they do that - no judgement from them, that's just how they know me. But there are lots of times where they want to go somewhere or do something, and I have to say no. For everythng - school or outside of school - I have to say "maybe" or "hopefully if I'm feeling ok". Their dad is "backup" for everything, and my kids have said "dad is the only one who ever takes us to do fun things". I often feel bad for my kids that they have a sick mom even though I know that they have a good life, especially compared to the lives of so many kids in the world. I especially worry about my older daughter who has many physical characteristics like me, and I worry that she will come down with auto immune, and she is already so dependent and lazy (although she has many wonderful qualities - these are her big weaknesses and are partly my fault). I printed out a poster that I hung on our fridge and it really does motivate me to do the little things even if I don't feel like it: "There is no way to be a perfect mom, but there are a million ways to be a good one".

7

I was diagnosed of March 2013. I’m a single mother with 2 boys. 16 & 10. I’m so proud of them because they have really stepped up with helping me and have been around the house. They adjustEd to my lupus sle very quickly but I had to be strong for them to let them know that I wasn’t going to leave them. When they are around sometimes I fake being okay but, let them assist me as well lol! It was really hard for me to let my sons help me when, I’m the only one they have to depend on. It’s hard adjusting from being a sports mother, attending every game, driving my sons classmates and players home,picking them up, Their friends staying the night and going on outings, ordering pizza. Just not being able to drive and not abe to afford those littlr things are frustrating. I’m behind on bills now due to school clothes, supplies, shoe.s wmenshen my eldest wear size 11 men. Not being ablee to afford to gives him money on his away footballs games really hit me hard when I don’t even have $1 to buy a burger. It’s still hard for us to adjust from living on a budget and not having any spending money after my job disability check. I got anxiety yesterday bc his cell phone is damaged andtheymcharging me $100 for a placement

8

Hi Blondie

I just had to mention that my son was a "den mother" and then scout master. My grandson just got his Eagle. Thanks for your help with the cub scouts. Its a lot of work. As my son says "it's one hour a week lol.

I wish you good days and better ones.

Stay positive

Cindy

9

I'm a single mom of 2 daughters, who are now 19 & 21. I was diagnosed with lupus when they were 5 & 7. I felt like my girls had no choice but to grow up a little faster than most. There were days that I beat myself up over the things that I couldn't do any more. My girls have always been there for me no matter what. Last year we had a devastating blow dealt to us. I had a heart attack in Oct of 2011 & was told that I had to have heart valve surgery within 6 mos or they couldn't guarantee that I'd be here. Finally had the surgery in May of 2013, which turned out to be the hardest thing that the 3 of us had to deal with. Since that time, I've had 4 small strokes, told that I have maybe 10 yrs & am living on disability. Through it all my girls have remained my constant soldiers. I look at them & think to myself, I didn't do to bad. They have turned into the most amazing young women! Both of them are going to college full time & working full time. I wish that I could've provided them with more, but they tell me that all of this has made them the strong, surviving women that they are. They remind from time to time that they wouldn't be where they are today if it hadn't been for me being their mother, friend & teacher. As for the rest of our families, some of them understand, others don't & I believe that the ignorance of others that don't care to learn about it is their problem not ours. It is all a tough pill to swallow, but we play the cards that we are dealt to the best of our ability.

10

My son was 3 when I was diagnosed. I worked as an RN in a neonatal unit & eventually had to change jobs to a Case Manager. I was in & out of the hospital for Lupus as well as Sepsis. The Lupus was in my kidneys & I had to have Cytoxan IV on week ends & go to work on Mon. My work was understanding, my husband not so much. He's never been sick so he couldn't relate to me. Thank God I was able to work 18 yrs & ended up having to quit & go on disability. My son is now 24, graduated from college & working. God is good without his help I don't think I would have made it.

11



freightliner said:

Hi Blondie

I just had to mention that my son was a "den mother" and then scout master. My grandson just got his Eagle. Thanks for your help with the cub scouts. Its a lot of work. As my son says "it's one hour a week lol.

I wish you good days and better ones.

Stay positive

Cindy

12

My son says I am like Garfield on the weekends all I do is eat and sleep. Weekends are usually the only times I have to crash

13

So sorry about your situation! I went into pregnancy knowing I already had Lupus, but didn't want to miss out on life because of it. My son is a really great kid, for that I am thankful, but you can't blame yourself or your health for your childs actions. Ultimately his decisions are his, and he will have to be responsible for his actions.

whathappensinvegas said:

I was a single mother whose lupus started showing (although I didn't realize at the time) at the same time that I had a back injury at work and a divorce. Divorce...best thing EVER!!! Back, not so much!!!

I have 2 boys, 6 years apart from two marriages. The first one was before I was ill and injured and after divorcing his father it was he and I. We didn't have much, but made do. He is absolutely the apple of my eye. His father was never disparaging and although we didn't always agree, we did make certain that he had contact with family on both sides. My son has worked since 15 and is a supervisor at a security firm for local private hospitals in the area at 24. He is loving, supportive (emotionally) and when my current husband has to travel for work he checks in and stays over or whatever I need. Just today for no reason we talked for almost 2 hours.

Then the second, who is now 18. His father made certain that he cemented in his head that I "left" him (although, again I was going through several surgeries, rehab, etc.) not to mention the effects of what I now know was lupus. And, he made certain to make sure I felt I "owed" him for giving birth to him. And I did feel that way and tried to "make up" for not being in the same house although I was in the same crappy town. I didn't want to leave my son although it was physically killing me. By the time he hit 12 he was so abusive and demanding that I took him to counseling. Unfortunately, after being undermined by my ex at every turn I know longer have any relationship with my son.

I suppose what I am getting at is that, knowing then what I know now, I would have taken care of myself first. Something I have tragically learned from this is that if you don't then you are not very good to anyone, and can feel a failure and stress is an absolute killer.

I lost everything financially during that time, but he always wanted more, more, more. I finally got back to work, but for only a short time before the lupus kicked my butt again and I have been down off and on for the last several years.

So, one living frugally but lovingly has turned out strong and independent and just wonderful.

The other, given until there was nothing more to give, will likely end up in a not very nice place in life. Sadly, most of my family have cut ties to him as well because of his abusive nature.

I can look at them and know that I did what I thought was best at the time. One had a reasonable understanding, though not financially supportive father.

The other has a father whose only interest is money and believes that because my current husband has a good job, somehow he is entitled to something. I think this is the worst lesson that he could have ever taught my son, but physically I was in no condition to prevent it, without even knowing why I was ill.

I taught my sons to live within their means. If you are warm, have food, and mostly a loving family...everything else will work out. I did this by example, however they can take or not take what they will from what you can teach them.

Thankfully, the only one that ever stood in judgment was my ex and by extension my younger son, and quite frankly it is them that I feel sorry for.

I no longer allow them to take space in my mind. Not a lot of space there and what is left is open only for the positive.

As to better health, it's surprising how many people will say "I know so and so's aunt's cousin's half-uncle" or whoever has lupus and they still... I just explain that it affects everyone differently and even here with over 2,000 members I would bet that we would be hard pressed to find any 2 of us with the exact same symptoms. That is just the nature of the disease.

What a great subject to bring up Ann.

Thanks,

DeAnne

14



Blondie said:

Being a scout leader is like a full time job, thanks for your support, very happy for your grandson. My son is a star right now working toward Eagle. I just thank God for keeping me going.

freightliner said:

Hi Blondie

I just had to mention that my son was a "den mother" and then scout master. My grandson just got his Eagle. Thanks for your help with the cub scouts. Its a lot of work. As my son says "it's one hour a week lol.

I wish you good days and better ones.

Stay positive

Cindy

15

Sunniangel

I agree- your girls are much stronger for what they have endured and I dont think that is a BAD think. Not enough kids today grow up to be responible. I will never understnd why people don't understand what we go thru. I'm glad I have friends and family that understand.

Stay Positive.

Cindy

16

Maimouna33,

Has your husband checked out the group for family's of lupus sufferer's? Although I have encouraged my husband, he does a lot by going with me to the doc's (mainly b'cuz I forget Everything, :)) but it may be helpful and there may be some ideas for helping all of you. You are lucky to have support of any kind as so many don't.

Big Hugs,

DeAnne

Maimouna33 said:

I love this question - and have bookmarked it to go back and read the answers that keep coming in. I have 2 girls ages 10 and 14, and I got sick about 7 years ago, first with lyme disease that then triggered auto immune. My husband is supportive of my illness but of course it affects all of us, and I want to set up some counseling to help him work through some of his issues around my illness. He recently accused me during an argument that I give everything I have to my job and my kids - and nothing to him, which is true. I have to keep working for financial reasons, but also love my job - it makes me feel like I matter to the world. And my kids- if I could only give my energy to one thing it would be for them. However, the reality is that I am often so tired or sick in bed- when my kids get home from school that is where they go to look for me. They come and sit in my bed with me and tell me about their day. I feel so much love for them when they do that - no judgement from them, that's just how they know me. But there are lots of times where they want to go somewhere or do something, and I have to say no. For everythng - school or outside of school - I have to say "maybe" or "hopefully if I'm feeling ok". Their dad is "backup" for everything, and my kids have said "dad is the only one who ever takes us to do fun things". I often feel bad for my kids that they have a sick mom even though I know that they have a good life, especially compared to the lives of so many kids in the world. I especially worry about my older daughter who has many physical characteristics like me, and I worry that she will come down with auto immune, and she is already so dependent and lazy (although she has many wonderful qualities - these are her big weaknesses and are partly my fault). I printed out a poster that I hung on our fridge and it really does motivate me to do the little things even if I don't feel like it: "There is no way to be a perfect mom, but there are a million ways to be a good one".

17

Blondie,

Thanks so much. I am so happy that you were able to have a healthy, and what sounds like a wonderful son.

I did blame myself for many years, as did many members of my family although, again because of illness I was unaware I even had, I was unable to explain or defend. Now, in just a year since diagnosis, with my family's final understanding of what I was going through, boy that situation has changed dramatically.

You sound like a wonderful mother, and I tell you I wouldn't change my oldest for anything. He is worth any pain I went through at the time.

Good for you and big hugs to you and your son.

DeAnne
Blondie said:

So sorry about your situation! I went into pregnancy knowing I already had Lupus, but didn't want to miss out on life because of it. My son is a really great kid, for that I am thankful, but you can't blame yourself or your health for your childs actions. Ultimately his decisions are his, and he will have to be responsible for his actions.

whathappensinvegas said:

I was a single mother whose lupus started showing (although I didn't realize at the time) at the same time that I had a back injury at work and a divorce. Divorce...best thing EVER!!! Back, not so much!!!

I have 2 boys, 6 years apart from two marriages. The first one was before I was ill and injured and after divorcing his father it was he and I. We didn't have much, but made do. He is absolutely the apple of my eye. His father was never disparaging and although we didn't always agree, we did make certain that he had contact with family on both sides. My son has worked since 15 and is a supervisor at a security firm for local private hospitals in the area at 24. He is loving, supportive (emotionally) and when my current husband has to travel for work he checks in and stays over or whatever I need. Just today for no reason we talked for almost 2 hours.

Then the second, who is now 18. His father made certain that he cemented in his head that I "left" him (although, again I was going through several surgeries, rehab, etc.) not to mention the effects of what I now know was lupus. And, he made certain to make sure I felt I "owed" him for giving birth to him. And I did feel that way and tried to "make up" for not being in the same house although I was in the same crappy town. I didn't want to leave my son although it was physically killing me. By the time he hit 12 he was so abusive and demanding that I took him to counseling. Unfortunately, after being undermined by my ex at every turn I know longer have any relationship with my son.

I suppose what I am getting at is that, knowing then what I know now, I would have taken care of myself first. Something I have tragically learned from this is that if you don't then you are not very good to anyone, and can feel a failure and stress is an absolute killer.

I lost everything financially during that time, but he always wanted more, more, more. I finally got back to work, but for only a short time before the lupus kicked my butt again and I have been down off and on for the last several years.

So, one living frugally but lovingly has turned out strong and independent and just wonderful.

The other, given until there was nothing more to give, will likely end up in a not very nice place in life. Sadly, most of my family have cut ties to him as well because of his abusive nature.

I can look at them and know that I did what I thought was best at the time. One had a reasonable understanding, though not financially supportive father.

The other has a father whose only interest is money and believes that because my current husband has a good job, somehow he is entitled to something. I think this is the worst lesson that he could have ever taught my son, but physically I was in no condition to prevent it, without even knowing why I was ill.

I taught my sons to live within their means. If you are warm, have food, and mostly a loving family...everything else will work out. I did this by example, however they can take or not take what they will from what you can teach them.

Thankfully, the only one that ever stood in judgment was my ex and by extension my younger son, and quite frankly it is them that I feel sorry for.

I no longer allow them to take space in my mind. Not a lot of space there and what is left is open only for the positive.

As to better health, it's surprising how many people will say "I know so and so's aunt's cousin's half-uncle" or whoever has lupus and they still... I just explain that it affects everyone differently and even here with over 2,000 members I would bet that we would be hard pressed to find any 2 of us with the exact same symptoms. That is just the nature of the disease.

What a great subject to bring up Ann.

Thanks,

DeAnne

18

Bless your heart and thank you so much for your work in the neonatal. The nurse that was in charge of my son for 78 days was my rock during that time. I didn't have much more support at the time. You guys are angels.

Hugs,

DeAnne

OC GAL said:

My son was 3 when I was diagnosed. I worked as an RN in a neonatal unit & eventually had to change jobs to a Case Manager. I was in & out of the hospital for Lupus as well as Sepsis. The Lupus was in my kidneys & I had to have Cytoxan IV on week ends & go to work on Mon. My work was understanding, my husband not so much. He's never been sick so he couldn't relate to me. Thank God I was able to work 18 yrs & ended up having to quit & go on disability. My son is now 24, graduated from college & working. God is good without his help I don't think I would have made it.

19

My story is a bit different in that I developed Sjogren’s syndrome at 7, then Raynaud’s, fibromyalgia, vasculitis, migraines, through my teens, then was dx’d with lupus, kidney issues, severe fatigue and brain fog. My husband and I have been married 19 years but together 21. So I knew going in that pregnancy would be difficult. I was on bed rest with all of them in the last trimester with twice weekly stress tests. I lost our daughter at 32 weeks, her heart just stopped, probably related more to the sjs antibodies than the lupus. My oldest son is now 18 and is not understanding at all about my health issues. My 16 yo son is awesome, very understanding about my limitations and my youngest son is 7 and has only known a mom who is in bed most of the day. He just crawls in with me and we read and do homework together.
My husband tries to be understanding but he still wants his old wife back. The one who could keep the house clean, make dinner, go to work, and to the gym everyday. He has made me feel pretty bad about myself at times. I try to not let it bother me but I feel like a huge leach because I can’t work and we’re really struggling financially. I’ve been denied disability twice and I’m about to try again but with the help of a disability atty. I’ve learned to let the crap that comes from other people roll off my back. My real friends accept my limitations.
The only comments that really bug me are the ones that are made when I park in disabled parking. One woman was rude enough to say to me, “that spot is for disabled people only, and you can walk just fine” I very politely replied that I was disabled, I just try hard to not look like I am. I dress neatly and try to keep my weight down etc… I really wanted to smack her and say I didn’t cause my disability by overeating like you! I was born with it…lol I would never say that but boy did I ever want to.
My question for all of you is how do you manage your “good” time and do what has to be done as well as what you want to do? My husband’s biggest complaint is that our house is a mess. I made the choice to save my good days for my kids over housework etc… If my kids would help out more then I could do both but right now it’s one or the other.
I’ve tried to get my husband to go to counseling but he doesn’t think he needs it. I know (my BA was in psychology and I had started my Masters) that he is depressed but he won’t go in. I’m about ready to grind some of my antidepressants up and put them in his coffee or something…lol Sorry this is so long, it just hit a sore spot. I’d love to know how others have gotten their husband’s support and understanding. He wants me to go back to work even though I can only stay on my feet for about 30 minutes before I have to lay back down. Any advice would be greatly appreciated. Annemarie

20

Amen! to that!! I broke up with my boy friend of 4 years when I start getting sick the end of 2012 summer. I was diagnosed with kidney stones, it was really bad. God told me to let him go bc I know he wasn’t going to be able to give me and my boys the support that we needed. I have no regrets or doubts about my decision at all.