FEARS THIS DISEASE Being alone OR LOOSING MY JOB NOT BEING ABLE TO PROVIDE FOR MY FAMILY

General
1

IT IS the end of the year and normally corporate decided =s what posotions to resolve that year or cut back on, whether it is part time or not having no insurance is just as bad ,due to the amount of times I have to see specialist and have my eyes check due some of the meds having a effect on my eyes, It was a very long year between caring for my mom and making sure she got to her appts on my off days because she wasnot able to walk or care for herself. So she either had a appt or I did and chores around the house especially grocery shopping had to be done as well as cooking,cleaning outside door chores on and on,Despite it all we made it and we are still here.So very blessed to be here,

Despite this being the last on my list I fear being alone with this disease from a relationship stand point who would want to be with somebody that cant get up and go on a drop of a dime,Or at least hang out or cuddling I miss cuddling or having someone genuine in my life to call or text how i doing and vice versa..Wishing everyone a Happy holiday and a pain free day.

2

Merry Christmas Eve Lia mason !!! I am finding this Christmas to be a challenge. My energy is low and I feel like I am being lazy when I know 6 months ago I could not walk, or drive do to lupus. I actually have a lot to be thankful for. Yet something about Christmas is so isolating to me. It truly is a mystery.... I too am concerned about being in a relationship. I have not been in one for over two years now. I have not dated I don't think I have the energy it takes to start a new relationship. I will share I am talking to a past love of mine he lives in another state. I don't know,,,,, anyway you are not alone is what I am trying to say. I believe we are all doing our best !

Terri

3

lia mason,

You sound like a very caring person, taking care of your mom like that. Fear is a terrible thing to live with and most of the time, at least for me, the fears that I've had never really came to pass. I worried for nothing. I try to put it in God's hands and trust that things will work out for the best.

I've heard so many members of these forums complain about their partners not understanding and causing them stress. But I've also heard, and have chronically ill friends, who have wonderful, caring and supportive partners. That kind of person hasn't come into my life but I know people like that do exist. Meantime, I cuddle with my cat and she accepts me unconditionally. :') It seems like the friends that I have now are those who are dealing with health issues too. We can relate to one another and we respect that we can't always get up and go whenever we want. I haven't given up hope that some day we all will be able to heal and be strong.

Have a blessed Christmas and New Year,

Ally

4

i remember those concerns too. Maybe you shouldd consider applying for disability now, since it can take a couple of years. Go through a disability lawyer so you won’t have to appeal and sstart over. They only take a percentage of your first payment.

Not every guy wants someone who can get up and g o on the turn of a dime. Most moms can’t do that anymore, it all has to be planned. There will be someone who loves you. just choose a compassionate man.

As for worrying, it 's hard to not do it but if you can tell yourself that worry makes you worse and serves no good purpose, you can train yourself to take each hour as it comes. If you live in the future, you get anxiety. If you live in the past you get depression. Savor today. Plan for the future but don’t worry.

5

Merry Christmas.

Keep hope - my husband no matter what shape I'm in, takes my hand to face challenges together. 2nd marriage. been through a lot, still strong.

6

I am grateful too about making it through another year in respectfully decent physically okay. wish i was better but options could be so much worse.

I worried a lot about all the same things you have mentioned. I can say one i could control, my finances i am glad that i did plan early on for a time when i could not work. That is what i say, plan, speak to financial advisor about what options you have such as 401, put in at least as much as your employer matches, more if you can afford it. We did not buy as nice a home as our friends and family but instead one within our a budget we could live off either one of our salaries as my husband was okay health wise but had a job he could get hurt on any day he worked.

So now that the day has come when i went on SSDI since i could not work even part time anymore, i am doing okay financially. I cannot travel or even buy a car without budgeting for it but i am okay.

Also...even healthy women have no guarantees about finding Mr Right or as i say Mr Big!! As long as you get yourself out where you can meet people you have those chances happening daily! If not, you might consider online dating service.

I have friends who made excellent friends and even some married by doing the online dating. Even just joining online groups ..well i have made many friends in online clubs about things i enjoy! But i hear you and get how not being cuddled and hugged really can make for lonely nights. I had to go without my husband for at least a year where i barely saw him and it surprised me how much it affected me to go without daily hugs even though i had dogs!! Just is not the same...helps but not the same!

I often have wished that all people are alone or like me who could not children get together this time of year and celebrate with all of us! I have always tried to invite the new person or just broke up etc...as i get how lonely the holidays can be for many. I know another person wrote in about how she could not have children and just hurt her how people were going on during Thanksgiving about their kids and having their families together. But if you have children, no guarantee they will want to be around you...many children resent being raised by parent who are sick all the time and they had to become adults too young by helping the chronically ill parent, especially if single one.

my point is..no guarantees for any of us..we just can do the best we can! Plan for your financial future since that is within your control. Help to find a person by getting out or joining clubs in your area, online dating...just making yourself available and open to it.

you sound like a wonderful person especially how you are trying to care for yourself as well as your mother! That in itself says so much about what a good heart you have and sure many people, including men will find it attractive..more than seeing the part of you that is sick. I was engaged when i found out and i almost called it off as i did not want to be weight around my husband's neck down the road....he reminded me there are no guarantees in life period. He could break his neck and become a paraplegic and would i leave him? of course not...he was right life has no guarantees..just journey of many hurts but thankfully with places of great love too!

I hope this cheers you not makes you more depressed lol!! but sincerely...if it meant to be and you do what you can, you will find the right Mr Big!! I really believe that with all my heart, still!!

I am sorry you have touch of holiday blues..so do i...i miss every year the children i miscarried or who i so wanted...friends and family who are no longer among us and those that chose to just be out of our lives for whatever reasons. Put up some colorful lights, beautiful holiday music, read a mushy romantic holiday book even and BELIEVE!! it is the Magic of this Season and anything is possible!!


7

Dear Lupus Friends, I wish all of you joy in your lives with or without a partner. I am one of the lucky ones here that has a caring and loving husband, sons. daughter in laws, and grandchildren. I have maintained friendships from high school and throughout my life. I worked at that and sometimes it meant more of me contacting them then the other way around.

It has worked both ways. Keep hope in your lives no matter how hard it is. Peace!

8

hello lia

I know how you feel. My mother has come to live with me she has diabetes, copd, severe depression and dementia she just got out of the hospital and it is getting harder to deal with her. I miss someone to talk to and hold at times. Mom can not be left alone so I do not get out much. Both my children live on the property with there families and I could live with either of them when mom is gone but it is not the same. I did date once a while back from a dating site and it was horrible we meet for a meal and then a movie. He was so messed on something that I left after the meal and have not talked to him since. The 2 months we texted were nice having some one to talk with. I have been out of work since july and probably will not be going back.

9


Thank yo so much for your response and taking the time out to talk to me, It is alot of work starting a relationship and let alone dealing with lupus.God is so good to us and so many of us are truely blessed despite all the obstacles we endure.
Flower said:

Merry Christmas Eve Lia mason !!! I am finding this Christmas to be a challenge. My energy is low and I feel like I am being lazy when I know 6 months ago I could not walk, or drive do to lupus. I actually have a lot to be thankful for. Yet something about Christmas is so isolating to me. It truly is a mystery.... I too am concerned about being in a relationship. I have not been in one for over two years now. I have not dated I don't think I have the energy it takes to start a new relationship. I will share I am talking to a past love of mine he lives in another state. I don't know,,,,, anyway you are not alone is what I am trying to say. I believe we are all doing our best !

Terri

10


Thanks you so much for your response I too have a dog he is 14 I take care of him and 2 cats that belong to my mom and i take care of them too, Yes it saddens me when my girlfriend invites me to gatherings and i feel fine sometimes when she ask and other times I donot ,I sometimes feel she thinks I am being anti social able but I am not ,pulminary hypertension and lupus just takes ovre my body and the severe pains, I want to be more social able including going to the gym again but it doesnt always work out, I have been to gatherings and managed to have a great time and happy I went ,we will see.
Allergic said:

lia mason,

You sound like a very caring person, taking care of your mom like that. Fear is a terrible thing to live with and most of the time, at least for me, the fears that I've had never really came to pass. I worried for nothing. I try to put it in God's hands and trust that things will work out for the best.

I've heard so many members of these forums complain about their partners not understanding and causing them stress. But I've also heard, and have chronically ill friends, who have wonderful, caring and supportive partners. That kind of person hasn't come into my life but I know people like that do exist. Meantime, I cuddle with my cat and she accepts me unconditionally. :') It seems like the friends that I have now are those who are dealing with health issues too. We can relate to one another and we respect that we can't always get up and go whenever we want. I haven't given up hope that some day we all will be able to heal and be strong.

Have a blessed Christmas and New Year,

Ally

11

you are truely blessed to have loved ones and i am happy for you.

reet said:

Dear Lupus Friends, I wish all of you joy in your lives with or without a partner. I am one of the lucky ones here that has a caring and loving husband, sons. daughter in laws, and grandchildren. I have maintained friendships from high school and throughout my life. I worked at that and sometimes it meant more of me contacting them then the other way around.

It has worked both ways. Keep hope in your lives no matter how hard it is. Peace!

12

Thank you so much for sharing and it is scarey dating again I dont know which one is scarier trusting someone or being alone, people are not the same like they use to be ,peoples characters and morals have changed.Life is harer enough as it is than having someone trying to use you or take advantage of you .I wish you all the strength and courage for you and your mom , it is hard taking care of them but even more harder for them to be put in a home which would be my last alternative.How long have you been out of work and how long did it take for you to get approved for disability.

purplebutterfly said:

hello lia

I know how you feel. My mother has come to live with me she has diabetes, copd, severe depression and dementia she just got out of the hospital and it is getting harder to deal with her. I miss someone to talk to and hold at times. Mom can not be left alone so I do not get out much. Both my children live on the property with there families and I could live with either of them when mom is gone but it is not the same. I did date once a while back from a dating site and it was horrible we meet for a meal and then a movie. He was so messed on something that I left after the meal and have not talked to him since. The 2 months we texted were nice having some one to talk with. I have been out of work since july and probably will not be going back.

13

ooh thank you so much for those words of wisdom I do appreciate it I didnt know you could apply for disability while you are working, you have educated me and i appreciate it, Is that what you did ?How do they determine how much you get, I provide for my mom and wouldnt want to loose our home i have already for filed bankrupcy due to medical bills when I was diagnosed with lupus and I was out of work for 7 months.I feel like I am finacial ruined and my insurance isnt the best with a 1700 dollar deductiable before they will pay for anything.Thankyou again for taking the time to share
Sheila W. said:

i remember those concerns too. Maybe you shouldd consider applying for disability now, since it can take a couple of years. Go through a disability lawyer so you won't have to appeal and sstart over. They only take a percentage of your first payment.

Not every guy wants someone who can get up and g o on the turn of a dime. Most moms can't do that anymore, it all has to be planned. There will be someone who loves you. just choose a compassionate man.

As for worrying,,, it 's hard to not do it but if you can tell yourself that worry makes you worse and serves no good purpose, you can train yourself to take each hour as it comes. If you live in the future, you get anxiety. If you live in the past you get depression. Savor today. Plan for the future but don't worry.
14

Thank you so very uch for your genuine comments I was diagonosed year before and ihad to file bankfupcy due to the excessive medical bills, I was out of work for 7 months and received only 50 percent of my income which left up from month to month barely making it I had a little saved and do have a 401 k but it is hard to match but i have increased my amount, it gets hard when you have crumy insurance that requires a 1700 deductable wnd we know pre existing medical problems puts you at a higher risk.Taking all these meds have caused me to gain weight but when I get off at night sometimes I go to the grocery stores tor exercise I dont let my pulminary hypertension get to me so I walk when I can., When I was diagnosed with lupus i was going to the gym 3 times a week now I am thinking of rejoining again. My mom requires so much of my time on my off days I am normally taking her to her appt sor me to mine, she is just getting where she can do for her again and i am so proud of her she has been through alot with back surgery and stomache problems that she still suffer with.I cannot believe her strength and we strive off each other .Some times with so many chores to do i barely have time for myself but with mom getting better allows me some breathing room i love her so very much and I know vice versa,.We are so blessedto have a home and a peace of mind and the few friends I have are ok.GOD IS GOOD ALL THE TIME.

siskiyousis said:

I am grateful too about making it through another year in respectfully decent physically okay. wish i was better but options could be so much worse.

I worried a lot about all the same things you have mentioned. I can say one i could control, my finances i am glad that i did plan early on for a time when i could not work. That is what i say, plan, speak to financial advisor about what options you have such as 401, put in at least as much as your employer matches, more if you can afford it. We did not buy as nice a home as our friends and family but instead one within our a budget we could live off either one of our salaries as my husband was okay health wise but had a job he could get hurt on any day he worked.

So now that the day has come when i went on SSDI since i could not work even part time anymore, i am doing okay financially. I cannot travel or even buy a car without budgeting for it but i am okay.

Also...even healthy women have no guarantees about finding Mr Right or as i say Mr Big!! As long as you get yourself out where you can meet people you have those chances happening daily! If not, you might consider online dating service.

I have friends who made excellent friends and even some married by doing the online dating. Even just joining online groups ..well i have made many friends in online clubs about things i enjoy! But i hear you and get how not being cuddled and hugged really can make for lonely nights. I had to go without my husband for at least a year where i barely saw him and it surprised me how much it affected me to go without daily hugs even though i had dogs!! Just is not the same...helps but not the same!

I often have wished that all people are alone or like me who could not children get together this time of year and celebrate with all of us! I have always tried to invite the new person or just broke up etc...as i get how lonely the holidays can be for many. I know another person wrote in about how she could not have children and just hurt her how people were going on during Thanksgiving about their kids and having their families together. But if you have children, no guarantee they will want to be around you...many children resent being raised by parent who are sick all the time and they had to become adults too young by helping the chronically ill parent, especially if single one.

my point is..no guarantees for any of us..we just can do the best we can! Plan for your financial future since that is within your control. Help to find a person by getting out or joining clubs in your area, online dating...just making yourself available and open to it.

you sound like a wonderful person especially how you are trying to care for yourself as well as your mother! That in itself says so much about what a good heart you have and sure many people, including men will find it attractive..more than seeing the part of you that is sick. I was engaged when i found out and i almost called it off as i did not want to be weight around my husband's neck down the road....he reminded me there are no guarantees in life period. He could break his neck and become a paraplegic and would i leave him? of course not...he was right life has no guarantees..just journey of many hurts but thankfully with places of great love too!

I hope this cheers you not makes you more depressed lol!! but sincerely...if it meant to be and you do what you can, you will find the right Mr Big!! I really believe that with all my heart, still!!

I am sorry you have touch of holiday blues..so do i...i miss every year the children i miscarried or who i so wanted...friends and family who are no longer among us and those that chose to just be out of our lives for whatever reasons. Put up some colorful lights, beautiful holiday music, read a mushy romantic holiday book even and BELIEVE!! it is the Magic of this Season and anything is possible!!