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Incredible guiltTraumatizing my kids (19&21yo) I got toxic megacolon 3 wks ago, the drs saved my life w colectomy w ileostomy. I’m a single mom

Both my kids are persevering with multiple serious medical problems. I’m a single mom with very limited family, friend and community support. I’ve nearly died three times this year and 1-2 times every year for the past six years. My kids are very depressed about almost losing me again. My kids both have treatment resistant depression, CPTSD, endometriosis/ademomyosis,
rheumatoid arthritis, Crohn’s, epilepsy, polymigratory arthritis, degenerative spine disease, scoliosis, reynaud’s syndrome, cardiac issues, migraines and fibromyalgia, complex regional pain syndrome. The crushing guilt of being an ineffective mother, giving birth to two children who each have 5-6 illnesses inherited from me and their father who hurt them physically and emotionally especially when I was in the hospital getting 8 reconstructive spine surgeries with hardware, screws, plates in nine years covering most of my spine. My son is autistic spectrum disorder high functioning and affectionate. I’m so lucky to be here for my kids with my kids. I understand that without emergency surgery and a fully invasive opening, I wouldn’t be here today. I’m grateful to Gd for saving me. What have I done to my kids. I wasn’t so sick when I got pregnant. I didn’t know when I got pregnant that the kids father’s side has most of the same illnesses and there are many. Now both my kids, as they mature, their health diagnoses increase to longer terrifying lists of diagnoses including many of my dozens of disorders including from Crohn’s, epilepsy, an unspecified connective tissue disorders, immune modulatory disorder, endometriosis, interstitial cystitis, seronegative rheumatoid arthritis, primary immunodeficiency disorder, MGUS/multiple myeloma (monoclonal gammopathy of unknown significance), demyelinating syndrome like MS without known disease prognosis. This year I almost died three times from necrotic aspiration pneumonia with large abscesses in my lungs. I am eligible for the reversal ileostomy surgeries (2 surgeries- the first 8-10 hours is almost as devastating as the emergency colectomy. There’s a small window (4months) when surgeons can do this. It’s my only chance to get my life back to live w/o an ostomy. It’s a long process after surgery and the stoma is repaired in a follow up surgery. I need this surgery. It’s a long long recovery and major surgery with many complications. How can I do this to my family? I worry that my son & daughter can’t handle this much disruption, stress, sadness. We have such little support and no one called my kids to check on them as the plan we created was supposed to happen in emergencies. No one called. Every one gave excuses, so disappointing. Such a problem for future surgeries. I know they should be independent by now yet given their medical status, being an independent young adult is very challenging. I’m so thankful to my daughter who has been helpful beyond any thing I could have hoped for. She’s incredibly giving and loving to me. It’s hard to be here. Not functional, not effective.

#UndifferentiatedConnectiveTissueDisease #MixedConnectiveTissueDiseaseMCTD # primaryimmunodeficiencydisorder #PrimaryImmunodeficiency #AutoimmuneImmunodeficiency #CrohnsDisease #PTSD #ComplexPosttraumaticStressDisorder #ComplexRegionalPainSyndrome #CongenitalHeartDefect #Epilepsy #RheumatoidArthritis #DegenerativeDiscDisease #Scoliosis #InterstitialCystitis #Pneumonia #AspirationPneumonia
#necroticpneumonia
#Gastroparesis #gastrointesinlbleed #RheumatoidArthritis #singleparent #SjogrensSyndrome #DiffuseIdiopathicSkeletalHyperostosis #Diabetes #ComplexPosttraumaticStressDisorder #Ileostomy #Colectomy

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Incredible guiltTraumatizing my kids (19&21yo) I got toxic megacolon 3 wks ago, the drs saved my life w colectomy w ileostomy. I’m a single mom

Both my kids are persevering with multiple serious medical problems. I’m a single mom with very limited family, friend and community support. I’ve nearly died three times this year and 1-2 times every year for the past six years. My kids are very depressed about almost losing me again. My kids both have treatment resistant depression, CPTSD, endometriosis/ademomyosis,
rheumatoid arthritis, Crohn’s, epilepsy, polymigratory arthritis, degenerative spine disease, scoliosis, reynaud’s syndrome, cardiac issues, migraines and fibromyalgia, complex regional pain syndrome. The crushing guilt of being an ineffective mother, giving birth to two children who each have 5-6 illnesses inherited from me and their father who hurt them physically and emotionally especially when I was in the hospital getting 8 reconstructive spine surgeries with hardware, screws, plates in nine years covering most of my spine. My son is autistic spectrum disorder high functioning and affectionate. I’m so lucky to be here for my kids with my kids. I understand that without emergency surgery and a fully invasive opening, I wouldn’t be here today. I’m grateful to Gd for saving me. What have I done to my kids. I wasn’t so sick when I got pregnant. I didn’t know when I got pregnant that the kids father’s side has most of the same illnesses and there are many. Now both my kids, as they mature, their health diagnoses increase to longer terrifying lists of diagnoses including many of my dozens of disorders including from Crohn’s, epilepsy, an unspecified connective tissue disorders, immune modulatory disorder, endometriosis, interstitial cystitis, seronegative rheumatoid arthritis, primary immunodeficiency disorder, MGUS/multiple myeloma (monoclonal gammopathy of unknown significance), demyelinating syndrome like MS without known disease prognosis. This year I almost died three times from necrotic aspiration pneumonia with large abscesses in my lungs. I am eligible for the reversal ileostomy surgeries (2 surgeries- the first 8-10 hours is almost as devastating as the emergency colectomy. There’s a small window (4months) when surgeons can do this. It’s my only chance to get my life back to live w/o an ostomy. It’s a long process after surgery and the stoma is repaired in a follow up surgery. I need this surgery. It’s a long long recovery and major surgery with many complications. How can I do this to my family? I worry that my son & daughter can’t handle this much disruption, stress, sadness. We have such little support and no one called my kids to check on them as the plan we created was supposed to happen in emergencies. No one called. Every one gave excuses, so disappointing. Such a problem for future surgeries. I know they should be independent by now yet given their medical status, being an independent young adult is very challenging. I’m so thankful to my daughter who has been helpful beyond any thing I could have hoped for. She’s incredibly giving and loving to me. It’s hard to be here. Not functional, not effective.

#UndifferentiatedConnectiveTissueDisease #MixedConnectiveTissueDiseaseMCTD # primaryimmunodeficiencydisorder #PrimaryImmunodeficiency #AutoimmuneImmunodeficiency #CrohnsDisease #PTSD #ComplexPosttraumaticStressDisorder #ComplexRegionalPainSyndrome #CongenitalHeartDefect #Epilepsy #RheumatoidArthritis #DegenerativeDiscDisease #Scoliosis #InterstitialCystitis #Pneumonia #AspirationPneumonia
#necroticpneumonia
#Gastroparesis #gastrointesinlbleed #RheumatoidArthritis #singleparent #SjogrensSyndrome #DiffuseIdiopathicSkeletalHyperostosis #Diabetes #ComplexPosttraumaticStressDisorder #Ileostomy #Colectomy

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I'm new here!

Hi, my name is Sentence_4_life.

I'm worried about where to go from here. I have been dealing with these issues for a very long time. I feel like the doctors are tired of finding more and more autoimmune issues. I am tired of hearing it and having to deal with the effects. The medical issues I have, hold me back. But the medications are worse. I want to move and live my remainder of my life somewhere I would like to be. Because the regulations of the medications, it is the real issue of me not being able to move somewhere more affordable. The government has stepped in, and the doctors are no longer taking the proper care for you and your stuck if you are put on opioids early on and moving to another state isn't as easy as it sounds. Finding another set of doctors like I have now. Is extremely difficult, regardless of all your images, records, reports, medical documentation. They want you to start all over again and not prescribe the same meds. I am 62 years old. I just want to move where I wish to. Go to a doctor's office get to know the doctor like the old days. Get my medication filled and go back to my life. I have been attempting it for 3 years. I hit brick walls of what another doctor wants and etc. I'm old, tired, and want to relax for my remainder here.

#MightyTogether #Anxiety #Depression #Migraine #ADHD #RheumatoidArthritis #OCD #Fibromyalgia #MultipleSclerosis #Endometriosis #LupusNephritis #Lupus #RaynaudsPhenomenon #CeliacDisease #SjogrensSyndrome #Arthritis #PeripheralNeuropathy

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I'm new here!

Hi, my name is Sentence_4_life.

I'm worried about where to go from here. I have been dealing with these issues for a very long time. I feel like the doctors are tired of finding more and more autoimmune issues. I am tired of hearing it and having to deal with the effects. The medical issues I have, hold me back. But the medications are worse. I want to move and live my remainder of my life somewhere I would like to be. Because the regulations of the medications, it is the real issue of me not being able to move somewhere more affordable. The government has stepped in, and the doctors are no longer taking the proper care for you and your stuck if you are put on opioids early on and moving to another state isn't as easy as it sounds. Finding another set of doctors like I have now. Is extremely difficult, regardless of all your images, records, reports, medical documentation. They want you to start all over again and not prescribe the same meds. I am 62 years old. I just want to move where I wish to. Go to a doctor's office get to know the doctor like the old days. Get my medication filled and go back to my life. I have been attempting it for 3 years. I hit brick walls of what another doctor wants and etc. I'm old, tired, and want to relax for my remainder here.

#MightyTogether #Anxiety #Depression #Migraine #ADHD #RheumatoidArthritis #OCD #Fibromyalgia #MultipleSclerosis #Endometriosis #LupusNephritis #Lupus #RaynaudsPhenomenon #CeliacDisease #SjogrensSyndrome #Arthritis #PeripheralNeuropathy

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Battling #cowdens #BreastCancer #SjogrensSyndrome #Pain

Some days I wake up and I feel great. Some days I can’t even conquer my shoes. This is the chronic pain situation. Some days are amazing. Some days I feel like I’m bathing in bleach and ammonia. Some days the lower level of my house feels like a different county some days I can get to the gym. My life is weird that way. Can anyone relate?

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Battling #cowdens #BreastCancer #SjogrensSyndrome #Pain

Some days I wake up and I feel great. Some days I can’t even conquer my shoes. This is the chronic pain situation. Some days are amazing. Some days I feel like I’m bathing in bleach and ammonia. Some days the lower level of my house feels like a different county some days I can get to the gym. My life is weird that way. Can anyone relate?

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Mercy New by Melanie R.

Mercy New by Melanie R.

As You wake me in the night,
to speak to me as I write,

brightness covers darkness,
Lord, we thank You for your light.

Each morning
mercy new,
the dawning break of day.

The bread was broken for us,
to restore Your Mighty Way!

Your returning day approaches,
guidance needed most-

Your light has seen us through it,
Our lampstand; Heavenly Host.

A lighted path before us;
Not lost,
You led the way.

Opened eyes;
burning bright…
we praise Your Holy Name.

Father in Heaven,
The light that guides and shows us the way. Thank you for kindling Your Light of purity and allowing Your divine burning light to be seen. Seen to light the way of our path, to shine our testimony in the midst of great heavy darkness the way The Light of Christ anointed our faith.
One spark lights an entire room. Your mercy is fresh and new each morning as The Light of The World. The Great and Mighty Lampstand of constant presence shining before this world! Your light shines above the darkest shadows and empowers us to have the strength to overcome, as you have overcome every work of darkness! Praise God! Your Holy Light pours wisdom and chases darkness out. Heaven let your light shine down on us! We thank you for bringing mercy, life, and light in each dawn of day.
In Jesus’ glorious name,
Amen.

Psalm 106:1
Praise The Lord! O give thanks for He is good! For His mercy endures forever.

1 Peter 2:10
Once you were not a people, but you are now the people of God,… which had had not obtained mercy, but now have obtained mercy.

The Way, The Truth, and Life!
Shine your light! Give Light!

#RareDisease #sjogrens #MitochondrialDisease #PrimaryImmunodeficiency #ChronicIllness #HypothyroidismUnderactiveThyroidDisease #PosturalOrthostaticTachycardiaSyndrome #ChronicInflammatoryDemyelinatingPolyneuropathy #Dysautonomia #InsideTheMighty #ChronicPain #RheumatoidArthritis

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Float by Melanie R.

Float by Melanie R.

Punctured balloon.

Slowly dies.

Floats.

Aimless.

Half-filled.

Exiled.

Rubber thinned.

Knotted end.

Static- hair life.

Stretched.

Detached.

Deflated.

Breath of God.

Flowed.

Infused.

Contained within.

Reacted.

Patched Holes.

Renewed purpose.

Refilled life.

Carried on-high.

Rippled rejuvenation.

Exodus.

Faith message.

Proclaimed.

Rings on-high.

Reaches Heavens.

Rejoice!

Thank you Jesus for allowing this journey of floating on grace through rare chronic illness/chronic pain and all of its complexities. Let us all continue to float on in Your mighty strength and purpose!

Isaiah 40:9
You who bring good news to Zion, go up on a high mountain. You who bring good news to Jerusalem, lift up your voice with a shout, lift it up, do not be afraid; say to the towns of Judah, 'Here is your God!

Psalm 68:11
The Lord gave the word; great was the company of those who proclaimed it.

Luke 19:37-38
And when he was come nigh, even now at the descent of the mount of Olives, the whole multitude of the disciples began to rejoice and praise God with a loud voice for all the mighty works that they had seen; Saying, Blessed be the King that cometh in the name of the Lord: peace in heaven, and glory in the highest.

Acts 1:8
But you will receive power when the Holy Spirit comes on you; and you will be my witnesses in Jerusalem, and in all Judea and Samaria, and to the ends of the earth.

Please also visit:
Melanie’s Melody on YT.
Come and view these encouraging Christian stories with music, audio, and animations.

God bless! Thank You!

#RareDisease #MitochondrialDisease #SjogrensSyndrome #ChronicIllness
#ChronicInflammatoryDemyelinatingPolyneuropathy #ChronicPain #IrritableBowelSyndromeIBS #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #Endometriosis #HypothyroidismUnderactiveThyroidDisease

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