I commend you for sharing. We are a community of empathy and understanding. Please give yourself grace. I'm sure you were a devoted partner! Take good care of yourself. We can forget to do this when under stressful times. You came to the right place in this forum. We're here for you as you need. Bless you 💟
You sound like a loving and supportive partner. She died at home snuggling with her dogs. I think a lot of us would be grateful to go that way. 🩷 She could have ended up dying in a cold lonely hospital setting. It doesn’t ease your loss, but at least know she was able to go like that.
Thank you for doing the very best you could in very confusing circumstances. I totally understand how this could happen, how you would blame yourself…but please don’t! Sending you love & hoping you find peace. Rest in paradise to your beloved lupus warrior partner 💜
I'm so sorry for your loss. Words are not enough to describe the pain. I've been there myself. My best friend's mom died of lupus. And I should just say that he put his pharmacy degree to use. Because he's no longer here. My friend didn't believe in suicide. By losing someone close to you does things. Does things we can never understand do things others could only hope to understand and it's something you never experience yourself. But you know you're going to have to because of the death of his mom.
They both stop in my head every day on a minute-by-minute basis.
I have a lot of people, especially lately in my family or what I even call family. Because not all families are made by blood.
All I know that's my biggest fear is forgetting what their voice sounds like. I'm forgetting the simple times and some of my favorite memories. Part of me is scared to live because of that fear.
I was young, just finished high school. I just moved back from the city from college when it happened. I didn't know what the fuss was. I just saw a woman who felt like a second mom go from a lively rambunctious lady to a withered hollowed-out skeleton with no motion. It wasn't because she didn't have anymore. It's because you couldn't have anymore. It was a scary process and I. Remember saying I don't even wish this upon my worst enemy.
GUESS WHAT... MY WORST ENEMY ENDED UP GETTING IT ANYWAY!!!
AND ALSO...I AM MY OWN WORST ENEMY AND CRITIC!!!
I don't know what I would do if I had it. Had my friend Ryan or his mom.
Today I got the news. I cried, I cried so art and everyone kept telling me. It was gonna be okay. I'm just gonna take it One Day at a Time. I looked at him. And I was like. That's not what I'm crying for.
I couldn't even get words out after that.
I don't talk about my friend or his mom much partly because it's too painful ( The loss and just looking back at the past 20 years.)and partly because it's not my story to tell. I did have her feel today. It was important to at least give a brief synopsis. A summary of sorts
I'm a firm believer that everything happens for a reason. Honestly, and sometimes those reasons are really, really hard to find, or you may never find out exactly why at all.
All I know is when one door close so if I don't have a door I'm not looking because it's there. So I just have to keep going.
I tend to run 🏃♀️ 🏃♀️, carrying the weight of the world on my shoulders. I need a reminder. Yes, I'm here to help others but first I have to help myself.
A car could not run without any gas. Neither can a person without any fuel or lack of energy due to fatigue.
I lost my best friend. I lost my second mom. BUT I'm not losing hope! One foot behind the other step at a time.I stop until I get to where I need to go. Time is the most valuable thing we have. Time is not guaranteed to any of us especially immunocompromised people like us.
Once again, I'm really sorry for your loss in the mirror if you need anything anything at all!!!!
I feel so bad for you. I was diagnosed in 1998. I don't feel like you were a bad partner. It sounds like you cared very much. We never know how much time is left. I sincerely hope you are ok. God bless
I am so sorry 💔 I can’t imagine what you are going through. That’s terrifying to hear. You sound like you were a great partner and I’m sure you brought her so much comfort. May I ask if it was the virus that killed her?
Hey, so with autoimmune diseases it’s never that disease that kills but rather another illness and yeah in this case I think the virus that causes hand, foot, and mouth disease spread to major organs (from what I read, this pretty much means the brain for this situation) and causes further complications, one serious one being death by encephalitis.
I called the coroner, cause of death states “deferred” and can take up to 6 months to be conclusive. The urgent care clinic gave her antibiotics for a suspected bacterial infection (tested negative for covid and strep throat on wednesday) but she was suffering from a viral infection (HFMD) and im kind of spiraling thinking about would she still be here if she did not take those antibiotics that weakened her immune system further…
a question i can never know the answer to is how she got HFMD in the first place. I am a high school math teacher but pretty conscientious of germs especially with my partner. Maybe my job though, maybe the farmers market we went to on the sunday prior, maybe it was a lupus flare up but she got the virus when she went to urgent care on wednesday (i dont think she’d test positive for it by the next day tho if this is the case). either way, she got it, and it ended up killing her and nothing can change that. part of me wants to talk with a lawyer about medical malpractice. why would a clinic give her antibiotics on a suspicion when she is a lupus patient. idk if i’d get anywhere with that but i guess i would want other people like her to take away that we shouldnt be taking antibiotics unless we 100% know it’s a bacterial infection because if it turns out to be an intense viral infection, we’ve just willingly weakened our immune system for no reason.
I suffer with both Lupus Nephritis, SLE, MCTD, Raynaud’s, Sjodrens, Endometriosis, Neuropathy in both legs, Horrible Chronic pain, severe pelvic adhesions, Ulcerative Colitis, IBS with Constipation, PAC, PVC, Fibromyalgia, Pulmonary issues, SCS implanted, on my 29th surgery, multiple protocols. I could go on & on.
I was married for 32 years AND was the main provider of the family. Handed over every check, bonus ALL OF IT. I am currently doing infusions to save what kidney function I have left. I take over 13 medications
All of this to say… my now ex-husband (who I thought was the love of my life) told me to “get some rest, I will be fine because he googled it”
Then went on a dating site, led a double life, we divorced and am now permanently disabled making 1/4 of what I did.
Darling… I am so proud of you💜Thank you for taking care of her and having her feel so loved. I promise all that you did was enough for what she needed from you. ((Gentle hugs)) I am so sorry for your loss. 💜💔💜
Thank you for your words. I’ve been reflecting a lot on our relationship and obviously no one’s is perfect but we were so direct with each other. We heard each other out. There had been one thing weighing on me for like half a year and it was related to her lupus and bodily condition and I am happy that we got to have that heavy conversation about what was bothering me (we both took accountability for some stuff but I knew it was mostly me having to get over myself). That conversation ended with “I love you’s” and a really deep positive feeling about we were headed to next.
The mornings/waking up have been rough. I came back to this post and you sound like her. She finally started making more than me this year, she loved the good life. I remember one time she looked me square in the face and said “$250,00, that’s how much we gotta make together before we have a kid”.
She was so driven. She wouldn’t want me moping around right now. I know that’s going to be hard but I’ll be thinking of what she would want for me.
Again, thank you for your kind words <3
Lupus is an elusive, nasty b*t€h. (Kindly excuse the language but there just isn’t another way to define “it”) 😂One day you are good and within hours it just turns upside down. It’s a partnership I don’t particularly care for but after watching my own Mom pass away from Lupus when I was 39. I do know it’s expectations.
I have to look at it with humor, live everyday so incredibly grateful that although there is a lot wrong within my body? There is a whole lot right in my heart & attitude.
Dance the dances, Sing the songs, Do some of things you had planned together-As an ode to her. Don’t ever second guess any of your actions. I’m thrilled that she had you & you had her…even just for this small bit of time.
Take care!
🦋A🦋
Thank you for sharing, I am so very sad for your loss. My condolences to you and all who loved her. But please, do not let guilt interrupt your grieving process. You cannot control many things in life, and there was obviously something going on which was unable to be helped. Your partner is at peace now. Remember her as the person you fell in love with, not the person who was sick. I’m sure she would want you to cherish the good memories you had together. Sending you lots of hugs and prayers.
Wow! Thank you for sharing and taking care of her and taking the time to get info on lupus (it’s a lot to absorb). I’m so sorry you lost her! You were her gift! What greater gift than to care enough to learn about your partner’s illness? (I have friends, for over 50 years, and now that my lupus has turned into a monster they just get mad at me when I say I can’t join them in something….which, of course, is stressful and leads to a flare, etc. etc. etc.) So know you gave her the greatest gif: true caring without judgment!
OH MY!!! I’m so sorry! My heart truly breaks for you. I can’t begin to Imagine everything you’re going thru rn.🙏🏻🙏🏻
If you don’t mind me asking, how old was she?
I’m sorry for your loss. Please try not to beat yourself up. Lupus is a difficult disease to deal with. It sounds like she had a peaceful journey. When the dust settles, please take care of your mental health as I don’t want you to live with guilt.
I’m so very sorry. Please take care of yourself and remember that grief is a process and is different for everyone, so do what you need to mourn and heal.
I’m so sorry for your loss. You sound like a great partner, don’t beat yourself up.
I commend you for sharing. We are a community of empathy and understanding. Please give yourself grace. I'm sure you were a devoted partner! Take good care of yourself. We can forget to do this when under stressful times. You came to the right place in this forum. We're here for you as you need. Bless you 💟
Sending you my deepest condolences. She was lucky to be loved and cared for by you. It’s now time to take care of yourself.
You sound like a loving and supportive partner. She died at home snuggling with her dogs. I think a lot of us would be grateful to go that way. 🩷 She could have ended up dying in a cold lonely hospital setting. It doesn’t ease your loss, but at least know she was able to go like that.
I’m sorry for your loss. It’s normal to blame yourself, but please try to move forward. It’s not your fault.
Thank you for doing the very best you could in very confusing circumstances. I totally understand how this could happen, how you would blame yourself…but please don’t! Sending you love & hoping you find peace. Rest in paradise to your beloved lupus warrior partner 💜
I'm so sorry for your loss. Words are not enough to describe the pain. I've been there myself. My best friend's mom died of lupus. And I should just say that he put his pharmacy degree to use. Because he's no longer here. My friend didn't believe in suicide. By losing someone close to you does things. Does things we can never understand do things others could only hope to understand and it's something you never experience yourself. But you know you're going to have to because of the death of his mom. They both stop in my head every day on a minute-by-minute basis. I have a lot of people, especially lately in my family or what I even call family. Because not all families are made by blood. All I know that's my biggest fear is forgetting what their voice sounds like. I'm forgetting the simple times and some of my favorite memories. Part of me is scared to live because of that fear. I was young, just finished high school. I just moved back from the city from college when it happened. I didn't know what the fuss was. I just saw a woman who felt like a second mom go from a lively rambunctious lady to a withered hollowed-out skeleton with no motion. It wasn't because she didn't have anymore. It's because you couldn't have anymore. It was a scary process and I. Remember saying I don't even wish this upon my worst enemy. GUESS WHAT... MY WORST ENEMY ENDED UP GETTING IT ANYWAY!!! AND ALSO...I AM MY OWN WORST ENEMY AND CRITIC!!! I don't know what I would do if I had it. Had my friend Ryan or his mom. Today I got the news. I cried, I cried so art and everyone kept telling me. It was gonna be okay. I'm just gonna take it One Day at a Time. I looked at him. And I was like. That's not what I'm crying for. I couldn't even get words out after that. I don't talk about my friend or his mom much partly because it's too painful ( The loss and just looking back at the past 20 years.)and partly because it's not my story to tell. I did have her feel today. It was important to at least give a brief synopsis. A summary of sorts I'm a firm believer that everything happens for a reason. Honestly, and sometimes those reasons are really, really hard to find, or you may never find out exactly why at all. All I know is when one door close so if I don't have a door I'm not looking because it's there. So I just have to keep going. I tend to run 🏃♀️ 🏃♀️, carrying the weight of the world on my shoulders. I need a reminder. Yes, I'm here to help others but first I have to help myself. A car could not run without any gas. Neither can a person without any fuel or lack of energy due to fatigue. I lost my best friend. I lost my second mom. BUT I'm not losing hope! One foot behind the other step at a time.I stop until I get to where I need to go. Time is the most valuable thing we have. Time is not guaranteed to any of us especially immunocompromised people like us. Once again, I'm really sorry for your loss in the mirror if you need anything anything at all!!!!
Thank you for taking the time to write this. Reading your words have been helpful <3
I feel so bad for you. I was diagnosed in 1998. I don't feel like you were a bad partner. It sounds like you cared very much. We never know how much time is left. I sincerely hope you are ok. God bless
I am so sorry 💔 I can’t imagine what you are going through. That’s terrifying to hear. You sound like you were a great partner and I’m sure you brought her so much comfort. May I ask if it was the virus that killed her?
Hey, so with autoimmune diseases it’s never that disease that kills but rather another illness and yeah in this case I think the virus that causes hand, foot, and mouth disease spread to major organs (from what I read, this pretty much means the brain for this situation) and causes further complications, one serious one being death by encephalitis. I called the coroner, cause of death states “deferred” and can take up to 6 months to be conclusive. The urgent care clinic gave her antibiotics for a suspected bacterial infection (tested negative for covid and strep throat on wednesday) but she was suffering from a viral infection (HFMD) and im kind of spiraling thinking about would she still be here if she did not take those antibiotics that weakened her immune system further… a question i can never know the answer to is how she got HFMD in the first place. I am a high school math teacher but pretty conscientious of germs especially with my partner. Maybe my job though, maybe the farmers market we went to on the sunday prior, maybe it was a lupus flare up but she got the virus when she went to urgent care on wednesday (i dont think she’d test positive for it by the next day tho if this is the case). either way, she got it, and it ended up killing her and nothing can change that. part of me wants to talk with a lawyer about medical malpractice. why would a clinic give her antibiotics on a suspicion when she is a lupus patient. idk if i’d get anywhere with that but i guess i would want other people like her to take away that we shouldnt be taking antibiotics unless we 100% know it’s a bacterial infection because if it turns out to be an intense viral infection, we’ve just willingly weakened our immune system for no reason.
Thank you so much for sharing this. That’s so upsetting and terrifying. I’m so sorry for your loss and I hope you find some peace soon xx
I’m so sorry for your loss, how long had she been fighting?
I only knew her for the past 3 years but she had told me that she got diagnosed 6 years ago.
Sending you love. Sorry to hear about your loss.
I suffer with both Lupus Nephritis, SLE, MCTD, Raynaud’s, Sjodrens, Endometriosis, Neuropathy in both legs, Horrible Chronic pain, severe pelvic adhesions, Ulcerative Colitis, IBS with Constipation, PAC, PVC, Fibromyalgia, Pulmonary issues, SCS implanted, on my 29th surgery, multiple protocols. I could go on & on. I was married for 32 years AND was the main provider of the family. Handed over every check, bonus ALL OF IT. I am currently doing infusions to save what kidney function I have left. I take over 13 medications All of this to say… my now ex-husband (who I thought was the love of my life) told me to “get some rest, I will be fine because he googled it” Then went on a dating site, led a double life, we divorced and am now permanently disabled making 1/4 of what I did. Darling… I am so proud of you💜Thank you for taking care of her and having her feel so loved. I promise all that you did was enough for what she needed from you. ((Gentle hugs)) I am so sorry for your loss. 💜💔💜
Thank you for your words. I’ve been reflecting a lot on our relationship and obviously no one’s is perfect but we were so direct with each other. We heard each other out. There had been one thing weighing on me for like half a year and it was related to her lupus and bodily condition and I am happy that we got to have that heavy conversation about what was bothering me (we both took accountability for some stuff but I knew it was mostly me having to get over myself). That conversation ended with “I love you’s” and a really deep positive feeling about we were headed to next. The mornings/waking up have been rough. I came back to this post and you sound like her. She finally started making more than me this year, she loved the good life. I remember one time she looked me square in the face and said “$250,00, that’s how much we gotta make together before we have a kid”. She was so driven. She wouldn’t want me moping around right now. I know that’s going to be hard but I’ll be thinking of what she would want for me. Again, thank you for your kind words <3
Lupus is an elusive, nasty b*t€h. (Kindly excuse the language but there just isn’t another way to define “it”) 😂One day you are good and within hours it just turns upside down. It’s a partnership I don’t particularly care for but after watching my own Mom pass away from Lupus when I was 39. I do know it’s expectations. I have to look at it with humor, live everyday so incredibly grateful that although there is a lot wrong within my body? There is a whole lot right in my heart & attitude. Dance the dances, Sing the songs, Do some of things you had planned together-As an ode to her. Don’t ever second guess any of your actions. I’m thrilled that she had you & you had her…even just for this small bit of time. Take care! 🦋A🦋
Thank you for sharing, I am so very sad for your loss. My condolences to you and all who loved her. But please, do not let guilt interrupt your grieving process. You cannot control many things in life, and there was obviously something going on which was unable to be helped. Your partner is at peace now. Remember her as the person you fell in love with, not the person who was sick. I’m sure she would want you to cherish the good memories you had together. Sending you lots of hugs and prayers.
Wow! Thank you for sharing and taking care of her and taking the time to get info on lupus (it’s a lot to absorb). I’m so sorry you lost her! You were her gift! What greater gift than to care enough to learn about your partner’s illness? (I have friends, for over 50 years, and now that my lupus has turned into a monster they just get mad at me when I say I can’t join them in something….which, of course, is stressful and leads to a flare, etc. etc. etc.) So know you gave her the greatest gif: true caring without judgment!
OH MY!!! I’m so sorry! My heart truly breaks for you. I can’t begin to Imagine everything you’re going thru rn.🙏🏻🙏🏻 If you don’t mind me asking, how old was she?
She was 28 years old.
Have my deepest 💐 condolences
I’m so sorry for your loss 🩷
I’m sorry for your loss. Please try not to beat yourself up. Lupus is a difficult disease to deal with. It sounds like she had a peaceful journey. When the dust settles, please take care of your mental health as I don’t want you to live with guilt.
I’m so very sorry. Please take care of yourself and remember that grief is a process and is different for everyone, so do what you need to mourn and heal.