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Making a death plan this may be triggering for some readers. #Fibro asthma #Migraine arthritis #Parent of developmentally handicapped son

Last week, I was informed that my eldest son (51, Down’s syndrome) is in late stages of cardiac failure. He is still healthy, although slowing down due to a bad heart. A referral was made to palliative care who called me to make an appointment re: a death plan in the event that he passes away at home. No one wants to think the worst, but it’s best to be prepared, whether it is imminent or some time away. My son loves the Lord with all his heart and has been ready to go home for years Keep us in your prayers if you would, please.

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New

Hi thought I'd just introduce myself. I'm finding pain hard going I've got fibromyalgia, ms and arthritis in my spine. Would love to meet people that get how I feel. Constant pain is exhausting. I feel like it's just to hard to cope. Hope everyone else is having a good start to their week.

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can someone explain these results please?

MRI showed "Soft tissues: Subtle posterior paraspinal subcutaneous fat edema could be dependent edema."

I have very bad lower back pain, not able to bend down much because it makes it worse and then it ends up making me walk bent forward. laying down hurts for a while and then passes. rheumatologist suspected Ankylosing spondylitis, Xray clear. Everything else was normal. I was told at first it was just fibromyalgia then again they suspected arthritis as my inflammatory markers were elevated and get even more elevated when im in pain. now they might not suspect arthritis so I don't know what is going on anymore

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Here is a pic of me as a senior in high school, I was 17.

This was the first time I had really smiled since losing my best friend to suicide the year before.

It was hard to keep pressing forward when my whole world changed so so drastically.

My family and my faith that everything happens for a reason kept me holding on tight with all I had, putting one step in front of the other.
7 years later my brother was driving to school when an elderly man who was blind in one eye and almost blind in the other was driving when he should never have been. He slammed into my brother going 60mph.

We know my brother was protected by angels. He should never have survived but he did with only his wrist being broken and one of his lungs collapsing. But an officer had been driving behind him and saw the whole thing. He was able to call an ambulance right away and my brother had his lungs reinflated during surgery.

For the first time since my best friend died I KNEW that I could help Rylan, my brother, in a way I wished someone had been able to help and relate to me when Danny killed himself when I refused to date him.

Inadvertently, Rylan and I played parts in the death of a person.
It took me 10yrs to grieve and heal from Danny's death. I knew my purpose was to help Rylan in the way and with the words I needed so many years ago.

Later Rylan told me that my words helped him change his thinking of "why did this have to happen to me, my life was going great before this" to "everything happens for a reason and God has a purpose in all things, this trial is meant to be for my good somehow." Use that frustration to propell you forward as you learn why God chose you to be the one that man drove into."

Yes, bad things happen to good people but not to bring us down, to help us rise, overcome, and better ourselves in ways we never would have done on our own.

Within one hour of the accident, my trials and lessons from Danny's death was already changing and helping my brother for the better.

I worked hard to help him heal even when he wanted to pretend it never happened. But I knew and was guided by God to help Rylan each time. It was the first time in all those years I felt truly that I was meant to be right there.
Helping Rylan vet past the denial, the depression, and anger, bargaining, and finally to acceptance.

Rylan used the things he learned to then help others. We found he was really good at taking the info a psychologist gave him and using it to help others.

They had to do an investigation to make sure it wasn't Rylan's fault. Rylan's lawyer said I shouldn't have posted on Facebook to our friends and family before i went to the hospital but when Danny died I wished more than anything that someone posted about me and him so others knew I was involved. I never have regretted posting about it because Rylan got all the support I always wished I had. He had people to stand up for him instead of having to stand up to them all on his own, like I did.

Rylan's accident gave me purpose to put all my experiences to good use. Of course they found the man who was almost completely blind at fault. My family and Rylan did a farewell to the guy. His name was Charlie. He made a bad decision driving without a license when he couldn't see anything out of his right eye. It almost too Rylan's life along with him. All of us were glad it was Rylan who was protected by angels and that neither of them had anyone in their vehicles with them.

Rylan and I played a part both unwittingly, in the death of someone. It is a horrible club to be in but for me, it gave me purpose to help Ry just as I wished someone helped me in all the ways a death exacts.

After that I KNEW with confidence and no doubt, that everything happens for a reason and God never would make us suffer for no reason.

Everything has a reason and a purpose.

And I am so very blessed that some of my loss and suffering was able to help my little brother so much. And able to change his whole attitude and outlook.

What a gift!

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #AnkylosingSpondylitis #bedbound #BoneSplints #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #Depression #Disability #DistractMe #RareDisease #EhlersDanlosSyndrome #Endometriosis #CheerMeOn #Upallnight #IfYouFeelHopeless #Fibromyalgia #GastroesophagealRefluxDisease #Grief #HypothyroidismUnderactiveThyroidDisease #Insomnia #Hypersomnia #HighBloodPressure #Headache #JuvenileRheumatoidArthritis #Lymphedema #MentalHealth #MightyTogether #Migraine #MemoryLoss #PosturalOrthostaticTachycardiaSyndrome #PTSD #plantarfasciitis #PanicAttack #PanicAttacks #Psoriasis #PsoriaticArthritis #Psychosis #RheumatoidArthritis #SuicidalThoughts #Scoliosis #sciatica #ShinSplints #musclespasms #MultipleAutoimmuneSyndrome #Eczema

34 reactions 4 comments
Post
See full photo

Here is a pic of me as a senior in high school, I was 17.

This was the first time I had really smiled since losing my best friend to suicide the year before.

It was hard to keep pressing forward when my whole world changed so so drastically.

My family and my faith that everything happens for a reason kept me holding on tight with all I had, putting one step in front of the other.
7 years later my brother was driving to school when an elderly man who was blind in one eye and almost blind in the other was driving when he should never have been. He slammed into my brother going 60mph.

We know my brother was protected by angels. He should never have survived but he did with only his wrist being broken and one of his lungs collapsing. But an officer had been driving behind him and saw the whole thing. He was able to call an ambulance right away and my brother had his lungs reinflated during surgery.

For the first time since my best friend died I KNEW that I could help Rylan, my brother, in a way I wished someone had been able to help and relate to me when Danny killed himself when I refused to date him.

Inadvertently, Rylan and I played parts in the death of a person.
It took me 10yrs to grieve and heal from Danny's death. I knew my purpose was to help Rylan in the way and with the words I needed so many years ago.

Later Rylan told me that my words helped him change his thinking of "why did this have to happen to me, my life was going great before this" to "everything happens for a reason and God has a purpose in all things, this trial is meant to be for my good somehow." Use that frustration to propell you forward as you learn why God chose you to be the one that man drove into."

Yes, bad things happen to good people but not to bring us down, to help us rise, overcome, and better ourselves in ways we never would have done on our own.

Within one hour of the accident, my trials and lessons from Danny's death was already changing and helping my brother for the better.

I worked hard to help him heal even when he wanted to pretend it never happened. But I knew and was guided by God to help Rylan each time. It was the first time in all those years I felt truly that I was meant to be right there.
Helping Rylan vet past the denial, the depression, and anger, bargaining, and finally to acceptance.

Rylan used the things he learned to then help others. We found he was really good at taking the info a psychologist gave him and using it to help others.

They had to do an investigation to make sure it wasn't Rylan's fault. Rylan's lawyer said I shouldn't have posted on Facebook to our friends and family before i went to the hospital but when Danny died I wished more than anything that someone posted about me and him so others knew I was involved. I never have regretted posting about it because Rylan got all the support I always wished I had. He had people to stand up for him instead of having to stand up to them all on his own, like I did.

Rylan's accident gave me purpose to put all my experiences to good use. Of course they found the man who was almost completely blind at fault. My family and Rylan did a farewell to the guy. His name was Charlie. He made a bad decision driving without a license when he couldn't see anything out of his right eye. It almost too Rylan's life along with him. All of us were glad it was Rylan who was protected by angels and that neither of them had anyone in their vehicles with them.

Rylan and I played a part both unwittingly, in the death of someone. It is a horrible club to be in but for me, it gave me purpose to help Ry just as I wished someone helped me in all the ways a death exacts.

After that I KNEW with confidence and no doubt, that everything happens for a reason and God never would make us suffer for no reason.

Everything has a reason and a purpose.

And I am so very blessed that some of my loss and suffering was able to help my little brother so much. And able to change his whole attitude and outlook.

What a gift!

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #bedbound #AnkylosingSpondylitis #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #Fibromyalgia #ComplexRegionalPainSyndrome #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #GastroesophagealRefluxDisease #Grief #HypothyroidismUnderactiveThyroidDisease #Insomnia #CheerMeOn #Upallnight #IfYouFeelHopeless #Hypersomnia #HighBloodPressure #Headache #JuvenileRheumatoidArthritis #Insomnia #Lymphedema #PosturalOrthostaticTachycardiaSyndrome #PTSD #Psoriasis #PsoriaticArthritis #Psychosis #plantarfasciitis #PanicAttack #PanicAttacks #MentalHealth #MightyTogether #Migraine #MemoryLoss #RareDisease #RheumatoidArthritis #SuicidalThoughts #sciatica #Scoliosis #ShinSplints #BoneSplints

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Making doctor appointments alone #alone #neurologist #BackPain

It’s tough doing ALL of my medical care alone. Seeing a neurosurgeon again. Hoping for new technologies to treat painful spine opportunities #neurospinesurgeon #Scoliosis #Arthritis #ChronicIllness #ChronicPain #sciatica #musclespasms #HerniatedDisc #DDD #BackPain

6 reactions 2 comments
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I’m new here!

Hi, my name is Janesnew.

#MightyTogether #Fibromyalgia #Depression #Arthritis my fibromyalgia is with me all the time. I was diagnosed around 2000. Not sure I’m good at managing it because it just affects me all the time along with bad arthritis and problems in my neck and lower back and the other diagnoses go along with fibromyalgia syndrome.

3 reactions 4 comments