Major lupus meltdown. Don't know how I can go on

General
21

Perplexed,

I can't write a whole lot because my eyes are bothering me tonight, but I just had to write something to let you know I'm here. I'm so sorry about everything you're juggling. As some of the others have mentioned, I would definitely look into counseling, especially with everything you're dealing with. You have to learn to put yourself first. If anything, at least go to a few counseling sessions or a support group to find some additional stress release mechanisms. I have done a lot of guided imagery and progressive muscle relaxation before sleep to help me go to my "happy place" and release the tension from my muscles. I never knew I held so much tension in my face and jaw until I started it. I follow tapes by Belleruth Naparstek (there are ones specific for stress, anxiety, guided imagery, positive affirmations, etc). A few years ago I could access some of her recordings for free through her website. It might be something worth looking into. Lately I've been falling into my faith more and more. I've really learned to pray and completely let go of certain things. A lot of things in life are out of our control, yet we try to control them or the outcome(s) and stress ourselves out over it. I've learned to pray about those things and leave it up to a higher power. I can't tell you how many times I've prayed and just had a sense of peace and calm come over me.

Even though your new rescue furbaby needs training, he may be an absolute blessing for you. I don't know what I'd do without my furbaby to lay with me, comfort me, lick my tears, and listen to me ramble. There are studies out there that show just petting an animal can help reduce stress! Pet away!

Don't ever hesitate to come here and vent, cry, laugh, look for support, etc. That's what we're here for!

Sending you lots of love and hugs your way. If you ever need to chat, feel free to send me a message.

-Megan

22

That is so beautiful!! It is not everyday that someone says in a special way for someone to feel good about what ever is going on , that was soooooooo heart warming to me, Ballerina!!! Prayer goes a long way-and giving it to higher power is all we can do when we have tried to do what ever ourselves, the higher power can move all things . That was so beautiful to me…Beverly L.

23

This is almost exactly how I’ve been feeling for the last five years. Progressively worse each year. The guilt, resentment if my once active life now gone, the whole gamut. I’ve often said I wish I could crawl into bed and cover my head & hide while I rest or cry or try to figure out which doctor appt. to make next. What priority. Guilt from a marriage where he can’t enjoy hiking & water sports because of my SLE. But this is my life’s reality. I’m trying to turn it around to make me mad enough not to take me down. We can only do so much. I’ve finally accepted it & I’m trying to find passions that I can participate in with my SLE. I’ve said I’m sorry so many times to my husband & friends that its a given now.
But, for me, there are those rare “good” days. Where I can do something for myself which will fill my cup up & I’m therefore able to, for that day, laugh, maybe hike a little, not be on the couch. There’s always a glimmer of hope. It’s hard to see in all the dark times but hang in there. Take care of yourself because no one asks for this disease. And the people in our lives that stay, are there because they understand in their own way. The people that complain about how unfortunate it is they can’t do this or that with us only bring us down further. We have a illness that is almost impossible to control. Take us or leave us. Doesn’t mean our hearts aren’t good & loving, that we aren’t kind & compassionate. The good in us, our soul, outweighs the bad of our Lupus any day.

24

I have been diagnosed with lupus for just 7 days. I have been a mother for 30 yrs in November. I have had my spine fused previously. I can't comment on the lupus portion of your post because I don't know what is going on myself.

As to the adult kids, I have experience in those, plenty of experience. What has worked for me is quite simple really. I have a lot to do with a lot of young people through the org I work with. It struck me that while the ones I have met through the org lost their Mothers in their teens, they are now well adjusted level headed people in their late 20's early 30's. Yet my prince and princess are selfish, self satisfying, entitled and not to mention, miserable in their own existence.

What was the difference here in each of the upbringings? The difference is that the young folk who had lost their mums at a young age no longer had a back stop. No one to pick up their pieces and dig them out of their self destructive holes. They had full on responsibility of their own lives from an early age.

Where as my princes and princess have Mum to fall back on when: the drug dealer threatens to beat them up for unpaid drug debt, unwanted pregnancy, speeding fines, unpaid electricity bills....the list goes on and on. What did I do about this? I picked p my broom and started to clear up their mess, until, I started to say NO! And what did I do when the screaming continued AT me?? I showed them the door.

Each of them have since gone through the "I hate my Mother", but I know that at the end of the day unless I MAKE them stand on their own two feet - whatever the consequences, (and I mean that be it jail, homelessness, whatever), I will continue to pick up their pieces for the rest of my life. That would be hideous for me and most certainly unfair on them in the long run.

My Mother used to say to me "What the eyes don't see, the heart doesn't feel". I understand those words in their entirety now. Mama, YOU HAVE TO SAY NO! I certainly agree with others when they say seek counseling, because it is very easy for me to say, say NO to the buggers, but in reality it is not so easy when your heart is bleeding as does a mothers heart when their child is in pain.

As to the spinal fusion......best thing I have ever done, gave me back quality of life rather than just existing. But again, best recovered from a place where you accept that you have done what you can for the little dears, and you are at peace with yourself.

I absolutely feel for you. It is a DREADFUL place to be in, and I won't lie, it is a long road back. But if you don't turn back now, today, it will be even harder tomorrow.

I have a friend who also has four kids, and if I start to sway in my decision of "cut off" she reminds me that human's are the only species on earth who feel they must continue to "look after" our off spring once their lessons have been taught. Birds fly, puppies are sold and adopted, lions go in search of their own pride. And yet, more and more often we humans carry the responsibility of our adult kids way over and beyond. Why is that??

Please be kind to yourself, take it easy and take it one day at a time :))

P.S. There is an excellent program across the USA called Tough Love Inc. Google for a meeting closest to you. You will feel empowered by this group, you will find the strength from here needed to stand up to the disrespect you are experiencing.

25

Hi!, and welcome to the family of Living withLupus!! We all here are on the sme boat and want you to be comfortable and understand someone at all times of the day is Here for support, to vent, talk about what ever you want , it Don’t matter! Smile we all have Moments even though our sytopms are different at times and affect each one in different Ways, but the fact is , we do understand the pressing of trying to convenicene others who has no clue of the Pain ,fatigue we suffer with from day to day base… But ANYWay, welcome again and keep it moving with your head held HIGH an know that We Are Here with you , for you, and whatever , we can give support to you on lnformation as you and us go through…Bevely L.

26

Yesterday I received an email post that was an update from ohsoperplexed about seeing the doctor about your MRI. Every time I try to open it I encounter an error and can not find it any other way either. I want to find out what happened at the doctors office!!! Can someone tell me what is going on with this post or repost it? Thanks

27

OSP,

You know that you are loved here. And the only person you can let down is you. Must have been something in the air or water that week cuz I was in the same place. I didn't have the courage or energy to come here, and although I think counseling is good, I also think this is a wonderful counseling place as here we all know what we are going through. I applaud you for your courage to really let us know what is going on. Helping with others helps us as you well know.

I, too have a son that is severely disturbed. I am lucky that he lives in KY with his father, however when he lived here with us he was diagnosed with both bi-polar and ODD. I was insisting on therapy at which point his father filed false reports of abuse against my husband and many other things to the point that I had to get a restraining order against my own son. I have not seen him since he was 15...he is now 18. He terrifies my parents and relatives so I am aware of how heartbreaking that can be.

My husband is 9 yrs younger than I am and when we met I was having the one year without the symptoms I had had for the previous 6 years and thought that I was doing well. We fell in love and had some good months before I began seeing the symptoms. As much as I kept telling him that he didn't need to attach himself to someone with medical problems. He has seen me through several hospital stays and that was before we got married.

Since then we have had the ups and downs. He gets angry when I get in the mindset that he should find someone better and I have figured that when I say that I am insulting him and basically telling him he doesn't know his own mind.

I, also feel bad about not contributing to the finances of the house. I was a really good artist but with a family and job, it got lost. I have decided to find something that brings be joy and as that used to brings me joy, I have decided to find that joy again.

You are not fighting a losing battle...you just may need to find your joy again. I have read your posts as well as your PM's and you are strong and imaginative and definitely not a quitter.

I am always here for you on PM as you know. Maybe we can do some activities together? Sometimes just finding a way to make our time useful could be a big help. You are not useless! You are valued!

The sentence I read in your post is "you are surviving". YES...you are. Now let's find a way for you to feel like you are living.

If you feel like you need immediate help, you should go see a counselor. We will continually go through these ups and downs and I don't think there is a one of us that doesn't have these same feelings at some time or another.

In LV we don't have a good support system and so even if there are times I don't post on this site, just reading it is helpful.

You have been VERY helpful to so many, so there is no reason to feel as if you don't contribute in some way.

Big Hugs,

DeAnne

28

Reet, I deleted the post. After reading it through, it was pretty negative and not like me. My frustration was talking. bottom line is the MRI failed to even show any of prior documented issues from 8 years ago, my doctor poo pood it off instead of questioning why it wasn't right, and has referred me to pain management, that I cannot afford. I don't have 800 up front to become a patient with them. The doctor he wants me to see is big on expensive procedures, and will not prescribe even short term anything for pain unless you are battling cancer.

Thanks for caring, and taking the time to check up on me. I'm grateful to have a friend like you! hugs to you.

reet said:

Yesterday I received an email post that was an update from ohsoperplexed about seeing the doctor about your MRI. Every time I try to open it I encounter an error and can not find it any other way either. I want to find out what happened at the doctors office!!! Can someone tell me what is going on with this post or repost it? Thanks

29

DeAnne we have been talking lately, ad I agree so much, I need to re find my joy. And, it is very hard to accept my limitations, struggling there. I realize I may be able to help lessen disease progression on several fronts, but unable to undo damages. I have lupus, and 20 or so other diagnosis, but I am not my diagnosis. They are a part of what makes up my being. Does that make sense. Hope so.

My entire life is going through a metamorphosis of sorts. Health, family, finances, long term life altering decisions. Hopefully I emerge as a beautiful carefree butterfly. Time will tell.

So tell me, what kind of art calls to you? Do you draw, paint, sculpt, do needle work or what else? Please pursue it! with my muscle and pain issues, I have plenty of supplies, but unable to accomplish much. Do I need to ship a love you package to vegas? PM me if so.

huge hugs back.

whathappensinvegas said:

OSP,

You know that you are loved here. And the only person you can let down is you. Must have been something in the air or water that week cuz I was in the same place. I didn't have the courage or energy to come here, and although I think counseling is good, I also think this is a wonderful counseling place as here we all know what we are going through. I applaud you for your courage to really let us know what is going on. Helping with others helps us as you well know.

I, too have a son that is severely disturbed. I am lucky that he lives in KY with his father, however when he lived here with us he was diagnosed with both bi-polar and ODD. I was insisting on therapy at which point his father filed false reports of abuse against my husband and many other things to the point that I had to get a restraining order against my own son. I have not seen him since he was 15...he is now 18. He terrifies my parents and relatives so I am aware of how heartbreaking that can be.

My husband is 9 yrs younger than I am and when we met I was having the one year without the symptoms I had had for the previous 6 years and thought that I was doing well. We fell in love and had some good months before I began seeing the symptoms. As much as I kept telling him that he didn't need to attach himself to someone with medical problems. He has seen me through several hospital stays and that was before we got married.

Since then we have had the ups and downs. He gets angry when I get in the mindset that he should find someone better and I have figured that when I say that I am insulting him and basically telling him he doesn't know his own mind.

I, also feel bad about not contributing to the finances of the house. I was a really good artist but with a family and job, it got lost. I have decided to find something that brings be joy and as that used to brings me joy, I have decided to find that joy again.

You are not fighting a losing battle...you just may need to find your joy again. I have read your posts as well as your PM's and you are strong and imaginative and definitely not a quitter.

I am always here for you on PM as you know. Maybe we can do some activities together? Sometimes just finding a way to make our time useful could be a big help. You are not useless! You are valued!

The sentence I read in your post is "you are surviving". YES...you are. Now let's find a way for you to feel like you are living.

If you feel like you need immediate help, you should go see a counselor. We will continually go through these ups and downs and I don't think there is a one of us that doesn't have these same feelings at some time or another.

In LV we don't have a good support system and so even if there are times I don't post on this site, just reading it is helpful.

You have been VERY helpful to so many, so there is no reason to feel as if you don't contribute in some way.

Big Hugs,

DeAnne

30

Beverly, thank you so much for the reassurance and support. big hugs!

Beverly L. said:

Hi!, and welcome to the family of Living withLupus!! We all here are on the sme boat and want you to be comfortable and understand someone at all times of the day is Here for support, to vent, talk about what ever you want , it Don't matter! Smile we all have Moments even though our sytopms are different at times and affect each one in different Ways, but the fact is , we do understand the pressing of trying to convenicene others who has no clue of the Pain ,fatigue we suffer with from day to day base.... But ANYWay, welcome again and keep it moving with your head held HIGH an know that We Are Here with you , for you, and whatever , we can give support to you on lnformation as you and us go through.....Bevely L.
31

Helo Noah and Me. thanks for taking the time to share your own story with me, and how you have coped. I'm sad to hear of others who have to use tough love to get a message across. It is a hard thing to live through. DeAnne makes a huge and important point, about finding my joy again. Spot on. (typed as I sit here in tears.)

I have always been fiercely independent, and too proud for my own good. Asking for any kind of help is hard. I have always been everyone's go to person. May be a life lesson I need to learn, and getting it the hard way.

I appreciate you listening and posting. big hugs!

Noahandme said:

I have been diagnosed with lupus for just 7 days. I have been a mother for 30 yrs in November. I have had my spine fused previously. I can't comment on the lupus portion of your post because I don't know what is going on myself.

As to the adult kids, I have experience in those, plenty of experience. What has worked for me is quite simple really. I have a lot to do with a lot of young people through the org I work with. It struck me that while the ones I have met through the org lost their Mothers in their teens, they are now well adjusted level headed people in their late 20's early 30's. Yet my prince and princess are selfish, self satisfying, entitled and not to mention, miserable in their own existence.

What was the difference here in each of the upbringings? The difference is that the young folk who had lost their mums at a young age no longer had a back stop. No one to pick up their pieces and dig them out of their self destructive holes. They had full on responsibility of their own lives from an early age.

Where as my princes and princess have Mum to fall back on when: the drug dealer threatens to beat them up for unpaid drug debt, unwanted pregnancy, speeding fines, unpaid electricity bills....the list goes on and on. What did I do about this? I picked p my broom and started to clear up their mess, until, I started to say NO! And what did I do when the screaming continued AT me?? I showed them the door.

Each of them have since gone through the "I hate my Mother", but I know that at the end of the day unless I MAKE them stand on their own two feet - whatever the consequences, (and I mean that be it jail, homelessness, whatever), I will continue to pick up their pieces for the rest of my life. That would be hideous for me and most certainly unfair on them in the long run.

My Mother used to say to me "What the eyes don't see, the heart doesn't feel". I understand those words in their entirety now. Mama, YOU HAVE TO SAY NO! I certainly agree with others when they say seek counseling, because it is very easy for me to say, say NO to the buggers, but in reality it is not so easy when your heart is bleeding as does a mothers heart when their child is in pain.

As to the spinal fusion......best thing I have ever done, gave me back quality of life rather than just existing. But again, best recovered from a place where you accept that you have done what you can for the little dears, and you are at peace with yourself.

I absolutely feel for you. It is a DREADFUL place to be in, and I won't lie, it is a long road back. But if you don't turn back now, today, it will be even harder tomorrow.

I have a friend who also has four kids, and if I start to sway in my decision of "cut off" she reminds me that human's are the only species on earth who feel they must continue to "look after" our off spring once their lessons have been taught. Birds fly, puppies are sold and adopted, lions go in search of their own pride. And yet, more and more often we humans carry the responsibility of our adult kids way over and beyond. Why is that??

Please be kind to yourself, take it easy and take it one day at a time :))

P.S. There is an excellent program across the USA called Tough Love Inc. Google for a meeting closest to you. You will feel empowered by this group, you will find the strength from here needed to stand up to the disrespect you are experiencing.

32

Susie, thanks for sharing your struggles. It's good for each of us to know we are not alone. Bad things happen to good people, and my heart tells me it is all for a reason, even if I can't see why. I often wonder, for those of us who deal with chronic illness(es) if we are dealing with it because it helps us to accomplish what we are supposed to in this lifetime. We are here for a reason, and I have survived so much no one knows about, I know it is true in my case.

Today was a tremendously tough and emotional one. Coming here and reading your post and others posts is a balm to my spirit. I am grateful. big hugs!

Susie Boling said:

This is almost exactly how I've been feeling for the last five years. Progressively worse each year. The guilt, resentment if my once active life now gone, the whole gamut. I've often said I wish I could crawl into bed and cover my head & hide while I rest or cry or try to figure out which doctor appt. to make next. What priority. Guilt from a marriage where he can't enjoy hiking & water sports because of my SLE. But this is my life's reality. I'm trying to turn it around to make me mad enough not to take me down. We can only do so much. I've finally accepted it & I'm trying to find passions that I can participate in with my SLE. I've said I'm sorry so many times to my husband & friends that its a given now.
But, for me, there are those rare "good" days. Where I can do something for myself which will fill my cup up & I'm therefore able to, for that day, laugh, maybe hike a little, not be on the couch. There's always a glimmer of hope. It's hard to see in all the dark times but hang in there. Take care of yourself because no one asks for this disease. And the people in our lives that stay, are there because they understand in their own way. The people that complain about how unfortunate it is they can't do this or that with us only bring us down further. We have a illness that is almost impossible to control. Take us or leave us. Doesn't mean our hearts aren't good & loving, that we aren't kind & compassionate. The good in us, our soul, outweighs the bad of our Lupus any day.
33

Hi, you are always welcomed here and don’t have feel like we judge! Hope you enjoy the moments here with us…Beverly L.

34

OSP, do you have copies of all your MRI's? If not get them ordered to pick up and then call a radiologists' office and ask them how to get a radiologist to go over all your MRIs. I would not give up until you make sure that the bone structure are the same, etc. The medical field covers for one another and you need to be your own advocate. Good luck and prayers are with you!

Gentle hugs, Reet

ohsoperplexed said:

Reet, I deleted the post. After reading it through, it was pretty negative and not like hme. My frustration was talking. bottom line is the MRI failed to even show any of prior documented issues from 8 years ago, my doctor poo pood it off instead of questioning why it wasn't right, and has referred me to pain management, that I cannot afford. I don't have 800 up front to become a patient with them. The doctor he wants me to see is big on expensive procedures, and will not prescribe even short term anything for pain unless you are battling cancer.

Thanks for caring, and taking the time to check up on me. I'm grateful to have a friend like you! hugs to you.

reet said:

Yesterday I received an email post that was an update from ohsoperplexed about seeing the doctor about your MRI. Every time I try to open it I encounter an error and can not find it any other way either. I want to find out what happened at the doctors office!!! Can someone tell me what is going on with this post or repost it? Thanks