LUpus Patients Understanding and Support

How do I go on?!?!?

I joined this community site due to my son, had Lupus, & was hoping to learn more to help him......After being released from the hospital Tuesday night, he was found deceased in his apartment yesterday morning. He was 34 & had cystic fibrosis, osteoarthritis, lupus, stroke victim, MRSA, pseudomonus, small intestine knots, ulcer & hernia. The latter 2 recently diagnosed before release. We were supposed to go to the state he lived in & get him today. He was gonna move in with me & hubby in a couple of months......💧💧💧💧💧💔💔💔

I miss him! Thanks for letting me share!

37 Replies

I am so very sorry to read your message. You have my deepest sympathy. No loss is greater than that of a child.

Of course you miss him and your pain may feel unbearable. You ask how can you go on?I understand your meaning but your husband will also be feeling this unbearable pain.

I think it is important you can talk about your son - you did not mention his name - and it certainly seems he suffered so much from his many illnesses. I think it is important that both of you can talk about your son, together. It may seem tempting not to say anything, but I think this does not help you during this period of mourning.

There is no "right time" for mourning. You will experience many kinds of feelings,including anger and grief. There is no right or wrong way to mourn your son, but I hope you and your husband can share your experiences together.

You might also consider asking for bereavement counselling at some point. I understand that sometimes people feel this is a sign of weakness, but it is not.You are carrying an emitional weight that would feel too much to bear for most people.

If it helps, then you can also use this space.

With good wishes to you and your husband,



Thank you for being so kind. My son's name was Jason. He was fitting in nicely with our blended family of his & mine.

My new husband( yr anniversary soon) did lose a new son & we talk about Jason. He cries with me.......As I would for him if he,........Anyway we communicate & are grieving together.

All of it is sinking in & the pain grows. At the moment that is all there is.

This my first & hopefully only experience. Same for Tommie( husband).

We should have been on our way to get him(J)......

I will seek out counseling/support. It isn't a sign of weakness as I am aware some think. I went when I lost my dad.

I appreciate the advise & support.


Rayvenjade( RM)


The pain of losing your son, Jason, will feel as you describe - all consuming: that is all there is - but, there is also your new husband, Tommie's empathy, love and support: a gift. As you say, "WE communicate. WE are grieving."

I am glad you are willing to talk and seek help. The pain of losing a child can never go away completely.

In the meantime, if you want to talk here, this space is here for you.

It may feel hard to see any light, but may 2017 bring you and Tommie comfort, good health and happiness.

It is OK to be happy.

With good wishes,


1 like

Thank you, Ros! I'm ever grateful for the space. Jason had lupus & it's my understanding that often people with RA eventually test positive for this true? I've been told that I'm high risk for it since son was diagnosed with this also true?

I don't really know much about lupus which is why I joined this community. I know more about hepatitis & CF.

Lupus is a whole new ballgame for me though. I needed the education & wanted to give Jason & I a place to go for information & support.

I know I came to the right place. You've proven that by your kindness & letting me remain here. A most humble thank you, my friend! It means everything to this hurting momma. Bless you & may the New Year bring an ease to any suffering of lupus & its issues.

HAPPY🎊NEW🎉YEAR🎊🎈🎉to you & this community!

Thank you again!


Rayvenjade(Reland M)


God I wish I knew what to say to you. So very sad for you all. May 2017 please hold some peace & calm times for you. Kaz xxxxxx


Thank you, Kaz!

I never knew what to say to anyone in this situation either.'s a very hard, jagged pill to swallow.

I'm hanging by a thread but I'm here. All of this is very intense! Like a nightmare I can't wake up from.

Thank you for the prayers!


I am so sorry for your loss. I know how hard it is to have a profoundly disabled child. My prayers are with you and your family. ♡♡♡♡♡

1 like

Thank you, ZRHONDA. I'm so sorry about your child! My heart goes out to those who are blessed with special children. I have 2 nephews that are severely autistic. Hugs!


It is often those people who have suffered are often the most empathic and loving and understanding.

1 like

All your messages are very moving.

1 like

Thank you. I try to keep a good but real view of life. I never want to bring anyone down or hurt someone intentionally.

I accept that we are individuals with differing perspectives. I'm ok with it. I'm also ok with how different men & women are & how we compliment one another.

I am, however, my own worst critic & can judge myself harshly at times. A very bad habit for someone who feels things way too deep......but I'm a work in progress & just want to help where I can.

1 like

I can see that is true!

You are too hard on yourself!

You will need to try to be kinder to yourself, especially now.

But, perhaps this is too difficult?

Maybe you blame yourself in some way?

Could I have done more? What if I . . ? Are these the kind of thoughts you are having?

I have no doubt you were a good and loving mother to Jason.

With good wishes,


1 like

I was 16 when I had Jason. It was 3 months after his birth did we learn of the Cystic Fibrosis. We as in me & my family. I was single when he was born. I had no clue what I was doing but I did the best I could. Anyhow, I was labeled the cool mom. His friends always came over. There was always a house full of boys....with huge appetites! Lol!

Regret thoughts?.....I feel I should've been there to protect him.........I miss him so!


Of course you miss Jason. You will always miss Jason. It sounds as if you were a great Mom!

There was nothing more you could have done. You loved him. That's what counts and you will always love him.

1 like

I hope I am not being presumptuous, but there is a poem I found helpful to me and would like to share with you.

Death Is Nothing At All - Poem by Henry Scott Holland

Death is nothing at all.

I have only slipped away to the next room.

I am I and you are you.

Whatever we were to each other,

That, we still are.

Call me by my old familiar name.

Speak to me in the easy way

which you always used.

Put no difference into your tone.

Wear no forced air of solemnity or sorrow.

Laugh as we always laughed

at the little jokes we enjoyed together.

Play, smile, think of me. Pray for me.

Let my name be ever the household word

that it always was.

Let it be spoken without effect.

Without the trace of a shadow on it.

Life means all that it ever meant.

It is the same that it ever was.

There is absolute unbroken continuity.

Why should I be out of mind

because I am out of sight?

I am but waiting for you.

For an interval.

Somewhere. Very near.

Just around the corner.

All is well.

1 like

Wow! Thank you! That was very sweet! I can't think of a time when grief hit me harder than in 2010 when I lost my dad........I still cry & miss him! I have lost family or a close friend every year since 2010. Lost dad then mom then marriage, husband, home......lost all belongings so what I had while living in my car is all I had left. I never wanted to start over at 48 yrs old! Once parents passed I was alone . I didn't know what to do or where to go. Ex had turned friends against me what little family I have left couldn't help.

I felt lost, like an orphan the day after my mom died. I had only 2 people who helped me & then a new friend asked me to come visit with her so I did. Her name is Sammie & she's a single mom of two. She gave me a place to live & supported me during my dark period. Shortly after starting therapy I met current husband & his kindness save my life. Him & Sammie helped me find my way back to the light & gave sound advise that helped me gain clarity to begin healing from the grief.

I was nearly admitted to the psych ward by therapist & doctor. I didn't know about the emotional abuse I'd endured from ex yet & my emotions were all over the place. Plus ex was still playing head games with me. It all, including his affair, left me broken, beat down, & feeling worthless. My ex was very cruel while I cared for dying parents. I had nightmares, many symptoms of menopause beginning, grieving loss of parents, home, marriage....... I wasn't close to my boys during my dark period. I didn't want them, though grown, to be subjected to my pain. I reconnected with them in 2014 when I filed for divorce. I was happy inside again & moving forward.

Last March Jason came and stayed with new hubby & I for over a month. We helped him get stuff for his new apartment & decided when his lease was up, he'd come live here. Better doctors for his diseases, he wouldn't be alone, & tommie & I could help him better.

I have loved Jason from the moment I felt him move in the womb. Ex treated him badly I learned. He learned how badly ex treated me too. We were in a good place & I was so excited to have him moving here!

I'm sick our many plans got cut off completely.......

Dammit this is so hard!💧💧💧💧💧 it feels the same as losing my dad......a total nightmare with no way out.

I'm sorry😓


What you went through, or rather, what you have had to endure of the past few years, does show something about you: your capacity to survive. But, it's more than just surviving. Even at your darkest moments, your thoughts were not about you, but what was best for your boys. This says a lot about you.

I can understand how this feels like a nightmare - a nightmare you cannot wake up from. This is too raw.

You don't have to apologise for having these feelings or letting me/us know. Although we are physically apart, I hope this communication is about helping you put into words what you are feeling.

No-one can take the pain away, but I do believe that talking/counselling/therapy is helpful to help you work through the pain. It may sound strange but we can feel "numb" - too "numb" to be able to even feel.

It is understandable that losing Jason will bring back memories of your dad and mom.

With good wishes,


1 like

Thank you, Ros. Your kindness & encouragement helps more than I probably realize at the moment.

Yes,Sir I am a survivor. We all are survivors of life's worst moments. Our skill level of coping is what differs, I believe. We have many lessons of life to learn. How we respond is on us alone.

Ive learned that when I stop asking why me?, & ask what's my lesson in all of this?, my answers come with an abundance of peace. One of my survivors type skills. I've also learned that some questions are best left as questions -unanswered.

The latter are tougher to reconcile but is possible. I go to the funeral home Wednesday morning to set up arrangements.......I have no clue what to do.

I know it's going to be hard. I don't remember doing my dad's . I was there but my Aunt helped me. Some people have all of this prearranged & paid for. I seriously don't want to do this! I hate the state of AR! I don't want to go ! Yes I'm winning........I'm frustrated, uncertain, empty, & mostly just scared. I have no idea what I'm afraid of. Not much truly scared me, lightening & the human monsters you never see coming......

This fear is different. I don't have the words to describe it. My heart is so broken💔💧💔💧💔💧


We have this survivor mechanism and that's good, necessary and important.

I wonder if you are "asking" to talk about here what you need to do when you go to the funeral home on Wednesday. I do think you need to have someone with you - your husband, Tommie.

I don't know what you are feeling or why and you write that this is "fear" but "different." I wonder whether this is about your sense that who you love can be taken away anytime, out of your control?

Of course,you are heart broken and that going to the funeral home makes Jason's death more real?

With good wishes,


1 like

It will absolutely make it all more real & sink further in.

As a parent, this is a number one fear & hope you never have to experience, a child's death.

Tommie is going with me. I was going by myself but he took off another day from work we can't really afford. My youngestson, Gannon is going to home with us.

I'm still unclear about the feeling I call a different fear. I haven't had much time to reflect on it yet but I'll keep you posted. Thanks all for letting me vent in your community! I greatly appreciate it. Hugs to all as I know your symptoms can get bad & frustrating from the lupus.


Good - I am glad Tommie will be going with you. You should not have to go to the funeral home alone.

I also feel you should be surrounded by family and Gannon is part of you all - all will be grieving in different ways - but together.

You will understandably go through many different levels of mourning. You will need time to reflect on what has happened. None of this has a time frame.

You are welcome to "vent" although I would not describe this as "venting" but trying to process and makes sense of the loss of your son, Jason.

With good wishes,


1 like

Thank you again for understanding. We haven't had services yet. I had to sign paperwork for his being received & cremation. He was already there for a private viewing.......I couldn't do it. My last memory of him is him laughing in the shop/ garage right before Thanksgiving when him & Gannon came. It's a fond memory & strong mental visual I didn't want to replace with a viewing. I have learned that he passed the night he got home from the hospital & he had a big dip in his mouth & was making a list for the store when he died. Cause is pending waiting for coroners report. We have a memory page for him on Facebook and it will be there where we will announce a service. At the moment paying for all else is our priority & challenge at the moment. Gannon cleaned out his apartment last weekend. His(Gannon) dad(my ex) has decided hating me supersedes the loss so I'm not welcome to Gannon's apartment to go through Jason's stuff. Gannon is going to bring it to me instead. That hurt my feelings a little. I don't hate my ex nor do I have anything like love for him. The man destroyed all I ever felt for him. Pity is all there is left. We are strangers with a grown child in common. No more, no less. I fear Gannon is having to suffer his dad's NPD now. Another issue I don't know how to alert Gannon to yet.

Anyway, there are three of us sorting through the if only, I should have done this or that......all the self blame scenarios that may have prevented his death......I should've gone to the hospital 5 hours away, I should've been there when he was released, etc. We were supposed to pick him up that Friday & he was going to bring in the New Year with us....... I remind myself that even if I had been there it doesn't mean he wouldn't have died. Realistically, when it your time it's your time despite efforts made otherwise. He was alone & that is tearing me apart. Seeing him die.....that would've been far worse I believe. Gannon blaming himself for not staying longer, Heather blaming herself for not having him come stay with her....Heather is Jason's ex wife & best friend. She's remarried with 3 little boys Jason was uncle to & loved dearly.

We weren't meant to see him die or it all would've played out differently. The guilt factor remains regardless. There has been several moments when I hear his laughter in my head & the sound is so beautiful I breakdown.

This may be strange, idk, but their ( parents & Jason) laugh is the thing I remember & miss the most of my loved ones. My ex ruined my goodbye with each parent as they succumbed to their cancers. Ex claims I deserted him for them. I chose my dying parents over him. In a way, I guess I did. Oh well, water under the bridge & his reason for hating me. He was cruel & demanding during & after my caring for them. I learned about his smear campaign during this time the day after my divorce became finalized(7/2/15).

Tommie & I married 1/8/16 & celebrated our first anniversary in AR. It was bittersweet & one I will never forget due to circumstances. Life does go on even when you don't feel you can.......I'm on autopilot.💧💔💧💔💧💔💧😭😓😭

1 like

From what you wrote, the image of your beloved son, Jason, is of him smiling and you do not want that memory to be taken from you.

It must be painful that even at this time, your ex-husband prioritises anger, over sharing together memories of Jason and mourning him together. Sometimes, the pain we feel cannot be dealt with and the result is anger. However, you have Gannon and you have Tommie and together, you can mourn the loss of Jason. I should imagine that Heather is also very upset.

I think it is very "normal" to go through the "what ifs"and while you rationally know it does not help, you cannot stop those thoughts at this unbearably sad time.

Saying "good-bye" is very important and I can understand your struggling with that aspect and having to wait for the coroner's report,must be an additional burden.

I am sincerely sorry for your loss. Losing a child, losing Jason, is not how life should be. Holding the memory of Jason,smiling and laughing, is a way of holding onto Jason.

With good wishes,


1 like

Thank you for all of you kind words & feedback,Ros! You've been a huge help in this time of grief.

Today was a hard day....Fullof tears. Now I can't sleep, some nightmares when I do, hot & cold sweats, sometimes I can't breathe, mostly I feel lost & anxious..& even feel outside of myself. I think that is the autopilot .I don't want to do much but I have to regardless.

I have so many projects to finish...

Well, here's to another day. Hope everyonehas a great weekend& that it's as symptom free as possible.

Jason had Lupus & it had done something to his blood that he saw an oncologist for every week. They gave him some kind of shot. I have no idea what It was called or what it was for. Any ideas? The only thing I really know about lupus is that it's an autoimmune disease & it effects the brain.

What is lupus exactly & how does it effect you?


I don't have time to speak to you now.

I will try and spend time tomorrow.

With good wishes,


1 like

What you are describing seems to me to describe trying to come to terms with something (nightmare) you do not want to accept. Accepting the death of your beloved son, Jason, makes it too "real." Sometimes, this response is necessary to protect us from falling apart altogether.

I don't know why Jason was seeing the oncologist. I do know that lupus can make certain cancers more likely - eg an increased risk of both Hodgkin’s and non-Hodgkin lymphoma in lupus patients.

Here is some information from John Hopkins Hospital:

I think this need to know is about trying to make sense of what has happened. Again, this is understandable and "normal." You are feeling powerless and helpless and have to wait for the Medical Examiner's report.

Systemic lupus erythematosus, is an autoimmune disease where the body's immune system becomes "overactive." It's the opposite of AIDs.

The body's own cells cannot recognise the difference between its own cells and foreign bodies eg bacteria and viruses and so, it attacks itself. Theoretically, lupus can affect every body system eg brain, lungs, kidneys, gut, eyes,skin, blood, muscles, ligaments, joints and so on. Every person will be affected differently.

Who gets lupus? The doctors cannot really say. It is part genetic, part environmental. It's like playing a card game where you are dealt a hand and if you are unlucky, you get lupus.

Jason was incredibly unlucky: CF, lupus and cancer. He did not deserve this suffering and he must have been a very courageous young man.

With good wishes,


1 like

Thank you for validating my feelings & reactionsas understandable & normal. My prior experience with grief left me holding a bag labeled selfish, stupid & crazy. I was forced to feel & express my pain in private & alone. Otherwise I was being selfish & crazy. So I have this battle of uncertainty & what's acceptable waring inside....

My interest in lupus is twofold. Yes, part is for Jason & the need to know what he may have experienced & the other part for what I may one day face. I was informedthat I am a high risk for lupus with Jason being diagnosed & a false negative RA diagnosis. The genetic factor may very well come into play here.

Are seizures a part of lupus?

Me & both of my boys have febrile seizures from infancy to ??? Gannon had diagnosed epilepsy at age three. They stopped as abruptly as they began & only took medication for it less than a year, thank God! Jason had a stroke & subsequently was diagnosed with lupus. The seizures began a couple of years ago. About 3-4 yrs followingstroke w/ lupus diagnosis. Are seizures associated with Lupus?

I'm going to the link you providedfollowingthis post...

One more question..... I'm feeling guilt about Jason being alone, is this also normal? The "your to blame" demon has come calling & I need ammo to end his head game. It's amazing how a little kindness& validation blows some of these demons out of the water, so to speak. A normal reality would be so nice to finally achieve! For me, this goal attained would be epic!

Thank you for everything & your kindness! Both move me to tears but good tears......Still on autopilot.....

Hugs to you & community! RJ


You are neither selfish nor crazy. They are cruel words said by someone who was unable to manage their own feelings and took it out on you. It is a form of bullying and very damaging. Every thought and feeling you are having is "normal." Nothing you are experiencing is abnormal. I say this as a psychotherapist to you.

In fact, not having these feelings and thoughts would worry me - because you would be in a profound state of denial or worse, disengaging with reality.

Please share your feelings to those who are accepting. Your son, Gannon is also grieving and only you know him and how he is managing. Tommie will also be affected, especially seeing you and Gannon so sad. Talking and not being afraid to show your feelings, is very important.

I hope this will be helpful to you when I tell you about Elisabeth Kübler-Ross and her 1969 book On Death and Dying.

The 5 stages of grief and loss are: 1. Denial and isolation; 2. Anger; 3. Bargaining; 4. Depression; 5. Acceptance. People who are grieving do not necessarily go through the stages in the same order or experience all of them.

The stages of grief and morning are universal and are experienced by people from all walks of life, across many cultures. Mourning occurs in response to an individual’s own terminal illness, the loss of a close relationship, or to the death of a valued being, human or animal. There are five stages of grief that were first proposed by Elisabeth Kübler-Ross in her 1969 book On Death and Dying.

The death of your loved one might inspire you to evaluate your own feelings of mortality. Throughout each stage, a common thread of hope emerges: As long as there is life, there is hope. As long as there is hope, there is life.

Many people do not experience the stages of grief in the order listed below, which is perfectly okay and normal. The key to understanding the stages is not to feel like you must go through every one of them, in precise order. Instead, it’s more helpful to look at them as guides in the grieving process — it helps you understand and put into context where you are.

Please keep in mind — all people grieve differently.

1. Denial & Isolation

The first reaction to learning about the terminal illness, loss, or death of a cherished loved one is to deny the reality of the situation. “This isn’t happening, this can’t be happening,” people often think. It is a normal reaction to rationalize overwhelming emotions. It is a defense mechanism that buffers the immediate shock of the loss. We block out the words and hide from the facts. This is a temporary response that carries us through the first wave of pain.

2. Anger

As the masking effects of denial and isolation begin to wear, reality and its pain re-emerge. We are not ready. The intense emotion is deflected from our vulnerable core, redirected and expressed instead as anger. The anger may be aimed at inanimate objects, complete strangers, friends or family. Anger may be directed at our dying or deceased loved one. Rationally, we know the person is not to be blamed. Emotionally, however, we may resent the person for causing us pain or for leaving us. We feel guilty for being angry, and this makes us more angry.

Remember, grieving is a personal process that has no time limit, nor one “right” way to do it.

The doctor who diagnosed the illness and was unable to cure the disease might become a convenient target. Health professionals deal with death and dying every day. That does not make them immune to the suffering of their patients or to those who grieve for them.

When you hear from the ME,if there is something you do not understand, goto your doctor and ask them to explain what happened to Jason.

3. Bargaining

The normal reaction to feelings of helplessness and vulnerability is often a need to regain control–

If only we had sought medical attention sooner…

If only we got a second opinion from another doctor…

If only we had tried to be a better person toward them…

I know you will "recognise" these "what -ifs!"

Secretly, we may make a deal with God or our higher power in an attempt to postpone the inevitable. This is a weaker line of defense to protect us from the painful reality.

4. Depression

Two types of depression are associated with mourning. The first one is a reaction to practical implications relating to the loss. Sadness and regret predominate this type of depression. We worry about the costs and burial. We worry that, in our grief, we have spent less time with others that depend on us. This phase may be eased by simple clarification and reassurance. We may need a bit of helpful cooperation and a few kind words.

The second type of depression is more subtle and, in a sense, perhaps more private. It is our quiet preparation to separate and to bid our loved one farewell. Sometimes all we really need is a hug.

5. Acceptance

Reaching this stage of mourning is a gift not afforded to everyone. Death may be sudden and unexpected or we may never see beyond our anger or denial. It is not necessarily a mark of bravery to resist the inevitable and to deny ourselves the opportunity to make our peace. This phase is marked by withdrawal and calm. This is not a period of happiness and must be distinguished from depression.

Coping with loss is ultimately a deeply personal and singular experience — nobody can help you go through it more easily or understand all the emotions that you’re going through. But others can be there for you and help comfort you through this process. The best thing you can do is to allow yourself to feel the grief as it comes over you. Resisting it only will prolong the natural process of healing.

I will deal with the second part of your post re: lupus later.

With good wishes,


1 like

I think your question relates to your own sense of mortality: a normal response to Jason's death.

Although there is a genetic component, it is not a hereditary disease. I am not sure what you mean by false-negative RA. Are you saying you have arthritis but your RA level is "normal?"

Blood tests alone do not diagnose SLE. Someone can have a positive ANA and be perfectly normal ie not ill and without any symptoms. Unless you have symptoms, try not to worry - although this is easier said than done, especially at this time.

Infantile seizures can run in families but are unrelated to SLE.

If SLE affects the brain ie brain inflammation or not enough blood going to the brain, seizures can happen. If Jason had a stroke, he MAY have had (I am not a medical doctor) the antiphospholipid antibody (Hughes). What this means is that the blood has become "sticky" and not thin enough to carry enough oxygen to the brain. Jason would be on blood thinners, eg warfarin or heparin injections.

All of this you can ask the doctor to explain to you. I am not a medical doctor.

It is OK to use this space here when you need to do so.

You are in my thoughts.


1 like

Thats it ! Thats what was wrong with his blood! It was too sticky! I couldn't remember specifics until you later it out for me.

My false negative meaningyes my RA factor is normal then positive back to normal but positive for lupus. I need more tests obviously & will update you when done. I do have all signs & symptoms of RA despite negative results on blood work & responded well to the medication but my liver says NO way! I've had chronic active hepatitis C. Type A at 2 yrs old followingRheumatic fever in 1967. Diagnosed with CAH via liver biopsy at age 4 in 69. My mom was the only one who didn't contract hepatitis.Me, my sister & my dad, a Vietnam vet, all had it & later tested positive for hep C. I was diagnosed non A non B at age 11, now known as C. I had type B at age 18 & it poisoned my gallbladder that I no longer have.


What is important is not so much the blood tests, but your symptoms. This is why you need to see a good rheumatologist or lupus specialist. There is no single blood test which can diagnose lupus.

There is a very confusing blood test, which confuses both doctors and patients alike. It is called the Lupus Anticoagulant Test. It is not a test for lupus, but a complicated clotting test. If your blood is "sticky" there are risks, from headaches, migraines, strokes, TIAs and even seizures, both petit and grand mal.

This is easily corrected by thinning the blood. Sometimes, only baby aspirin is needed. In more severe cases, warfarin or heparin injections (pregnancy).

On my other website, there is a great deal of information. All you need to do is to register. I will give you the details:

We have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

With good wishes!


Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.


Thank you for the posted stages of grief!! For me, having a heads up on what I'm feeling or may feel is invaluable! It lessens the shock when it hits, which is usually full force!

When ex had his affair( he called an innocentfriendship) & lying about it, I had no idea I'd be so full of rage. The level of it & intensity made my whole body quake. Being shy & timid Mose of my life I wasn't preparedfor such a consuming emotion!It caught me off guard & nearly admittedto the psych ward. Continued therapy & medication got me through to the next stage of grief & betrayal. I didnt know what was happening to me. I'd never known rage like this, nor anger. Id seen it in others &bared the brunt of it, but not from within myself. I hope I never experience it again. It carried hate with it & it was more than I could deal with. I started looking at a permanent solution to a temporary problem. I couldn't visualize anything beyond the crippling emotional pain. My parents , dad gone a little over a year & mom 6 months, his affair began & 2 months later we're separated & I'm living in my car shell shocked. So I began searching for informationon how to get pasted infidelity & reconciling my marriage. Thst when I learned that how I was feeling about all of it on top of grief was normal & I wasn't crazy like I was being told.....All the lies unravelled . It was a game changer & I began to change as well.

Oh boy! Got off on a tangent, sorry!

I had found a list of emotions & reaxtions that infidelity creats from being betrayed & deceived & lied to.. Needkess to say, enlightenment empowers you! No longer blind & now informed, I was able to accept everything so I could look D move on. There's much more but my point is having the list of emotions empoweredme to cope in a more productive rather than destructive manner. The list & link you've provided will help me & I greatly, humbly appreciate it & all of your help & patience. I will be finding a support group as well. I feel bad taking up so much time on a community for others who need your guidance dealing with a devastating illness.

Thanks to all here for your patience.

Ros, you are a wonderful person & I can't thank you enough for all your kindness, help, advise & informa-tion. I'll do my best to remain on topic.

Bless you!

Your friend,

Reland aka



Dear Reland,

One of the important things about counselling (which I recommend to you) is to say whatever comes into your mind. Nothing is a "tangent" or irrelevant. Everything you say, is important. Perhaps, this is a new experience for you. No judgements or telling you what to do, but somewhere "safe-enough" to talk and know you will be listened to in a respectful and empathic manner.

Searching for information, as you say, can make you feel less powerless and more in control. Yes, it is important to take control over your life and I think this is what you are trying to do.

You are "entitled" to this space and I will always try to give a space to talk to anyone and everyone.

This is why I started LUpus Patients Understanding & Support (LUPUS).

It will take you time to grieve and mourn. You need to be kind to yourself.

As always, you are welcome here anytime.

With good wishes,


1 like

So sorry for your loss I cannot begin to imagine what you are going through. Sending you a big hug xx

1 like

Thank you, shutter! It's the most intense nightmare I've experienced. I wish I had the proper terminology for an accurate description.

I feel things too deep, but believe when a loved one we share blood with dies, a part of us dies with them.......I almost made it without a loss last year.....almost....


But, that loved one does not die completely for they live inside of you for always.

1 like

For me, the loved person is never truly dead because they live inside of you. Jason will always be with you: in your memories and in your loving heart. This may feel impossible right now.


You may also like...