Hi, my name is NGlucina111. I'm here because I have chronic necrotizing pancreatitis,inertia hernia in my groin ( which honestly is almost more painful than CP) one kidney and a decent variety of other issues!!
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Next Tuesday I am going to have three procedures which will be very invasive. I will have to start preparing for them Monday morning and it's going to be miserable. I won't get much sleep that night either. I have been dealing with pancreatitis, pain, and nausea for four months and so far, all of the tests I've had offer no explanation. So...they want me to do this.
I am totally torn apart about this. I've felt like a toddler, stomping my feet, and whining, "I don't wanna do this!" I have experienced trauma in the past and everything that's been happening has been triggering my PTSD something awful. There is nothing I can do about it this weekend so I need some major distraction. Lately, I've mainly been crocheting, trying to sew (I'm a novice), and finding good TV to watch. I don't know if that's going to be enough. I'm just looking for suggestions for distraction. Anyone have some ideas for me? Thanks.
#PTSD #ComplexPosttraumaticStressDisorder #Anxiety #DistractMe #CheckInWithMe
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Have had anxiety since I was 12 following a family loss. Then went to counseling at 16 for a family business taking too long to startup. Landed in the hospital in 2020 with pancreatitis and ecoli, I spent a month in there with no one able to visit me, then landed back in the hospital in 2021 for gallbladder surgery. Iam a happy guy, healthy, 27 years old, I just wish this anxiety and panic attacks will go away. Currently looking for a therapist but hard to find. I appreciate everyone in this group to review my past life problems, I’m not here for sympathy, I know this is just another chapter in my book but I just wish it was different. I would give anything for a day without shortness of breath or my throat feeling like it’s closing. Thank you all for listening.
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Two months ago I was struck down by a severe case of pancreatitis. My Thanksgiving dinner in the hospital was toast and jello. Just before Christmas I had surgery to remove my gallbladder. During all of this, I have experienced an overwhelming amount of pain. I already had an issue with it, but it seems all the pain medication has caused another problem which continues to create a great deal of pain.
I am dealing with this horribly on an emotional and mental level. I feel so much shame and blame myself, believing that I brought it all on myself. I continue to punish myself and have no self-compassion whatsoever. I am even pushing my therapist away, choosing to make myself continue to suffer.
After a day rife with suicidal thoughts, self-loathing, and shame, I was finally able to journal a little last night and see how much worse I'm making this for myself. I sent a message to my therapist late last night, finally admitting some of what I'm experiencing. I'm so afraid I have frustrated him to the point that he won't even read my message (he usually reads them quite early in the morning and he hasn't yet - which just makes me feel worse about myself).
I'm afraid if I have another day like yesterday, I will act on my self-harm thoughts, being weighed down by the enormity of it all. I don't know how to keep coping.
#CheckInWithMe
#MentalHealth
#PTSD
#ChronicPain
#Depression
#Anxiety
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Ive been living with depression since a young age. Pancreatitis for a decade, and recently was diagnosed with PTSD and a new auto immune disease - vascultis. Eff me right? 😅🤦🏼♀️
Just looking to meet like-lifed people who understand chronic illnesses (physical and mental) 🙂 - y’a know, just cause we ‘don’t look sick’ doesn’t mean we aren’t fighting serious battles right?🙋🏼♀️
All the best in 2024! Hope to meet some of you soon 😘💁🏼♀️
#ChronicIllness #PTSD #Depression #ChronicPain #ChronicPancreatitis #Vasculitis #MentalHealth
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I've been having such a hard time the last month and a half. I'd already been dealing with a months-long bout of worsened depression and then I started November with COVID, a bacterial infection, and was eventually hospitalized with severe pancreatitis. I'm still dealing with pain from the latter and I will have surgery next week to have my gallbladder removed.
In amongst all of this, I've been dealing with intense triggers that have made it difficult to function. And of course, there's Christmas (thank goodness for online shopping). Yesterday I was so determined to deep clean my living room and vacuum, I'm still paying for it with pain this morning.
But...I did sleep okay last night and, despite some pain, I really want to have a good day. I NEED to have a good day. Everything that's been going on has depleted my mental and emotional energy stores. I was able to cope fairly well yesterday but I still had to expel a lot of energy. I need a day that will bring me even the smallest amount of peace without so many roadblocks.
My affirmation for today is "Own your awesome." I'm going to try to have a good day. Use positive self-talk (attempt to anyway), try to be mindful in what I do, and practice self-care (which is difficult for me). So, here goes...
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Hi, my name is Salnsal1. I'm here because I co care for my husband who has FTD with motor disorder and my mom who has Alzheimer's. My 27 year old daughter helps me she has all the anxieties according to a therapist and is on the spectrum plus has heart problems. I survived 4th stage cancer I live with chronic migraines, fibromyalgia, chronic pain, pancreatitis and a foggy brain with memory issues since kemo. I am looking for support and knowing of all of the above plus looking to connect with others that are dealing with some of what I deal with on a daily basis. My migraines started as a child without the headache part until I was 12 than the headaches started I wasn't diagnosed tell I was older. I was given 2 weeks to live in 2009. Life is very precious to me as I have had to fight my intire life. My daughter has tought me to listen to my body and slow down before I put myself out for days or weeks. I look forward to getting to know people on here.
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EDSer, Multiple other "special rare" diagnoses. Finally GI dx gastroparesis, collapsing esophagus. Already + many other EDS related GI "issues" megacolon, endogenous fermentation syndrome, chronic & acute pancreatitis which snowballs into kidney & liver failure.
Here's the questions I have to find new GI. Curre 1 Said gastroparesis & esophagus "absolutely not related to EDS & will do nothing more for me"
Pain is debilitating, rarely eat difficult to keep fluids down, this is more often than not. Needing to gain strength for C-Spine fusion before "you're paralyzed & in a chair for life" I'm grandma to a dozen...have dysautonomia & TBI from too many concussions from brady/tachycardia. I'm in FL yet willing to travel. NY Langone is best for dysautonomia or Tel Aviv!! Can't keep putting off neurosurgery. Yet nutritional status is down the drain. 67 yr old desert old hippie dippie. Nothing is promised yet I've 1 (outta many) institutionalized child 32 yrs young, & want to be here as long as possible. Ty for any & all input. I'm
lost & overwhelmed. #haveextaordinaryfun #LivingAllRareGirlsExpoloring
#Gastroparesis
This picture of my daughter shows a happy young woman, full of promise.
But underneath her smile is pain. The pain of feeling undeserving of love. The pain of excessive drinking to deal with those thoughts. The pain that came when she knew that she'd never feel good enough. Or enough.
My precious daughter passed away Feb 2022, when her heart finally gave out from chronic alcohol abuse. Her last year, she was hospitalized 7 (yes 7) times for pancreatitis due to her drinking. And her doctors warned her. Every time. Yet she always went back home, knowing that she'd continue drinking.
We talked by phone nearly every day. We shared music and books. And pics of our pets. And she'd say how she adored her husband. But that she didn't deserve his love or anyone's love. Nothing any of us said would change how she saw herself. Rehab didn't work. Therapy didn't work. She couldn't face the true source of her feelings and always stopped when therapy got too close Her friends, too, tried to help. But her beliefs came from a deep, dark place within her. We never found out what it was.
We are all moving on, in our own ways, at our own speed. Personally, I've learned that it's not disrespectful to her memory to move on.
I remember her as the 3 y/o, singing along with Patsy Cline on the radio. And at 18 months old, sitting in my lap, as we watched beavers in a pond, building their dam. And when we had to put the Christmas tree in the playpen to keep her OUT ! And her love of animals. And her laughter.
But mostly I remember that as each phone call ended, she'd say
"I love you Mama." And I'd reply
"I love you too, my precious girl." Or vice versa.💗
Those were our final words.
You really were the sunshine in all of our lives, Melinda.🌞
Rest peacefully, at last, precious girl, surrounded by God's love and Heavenly music and the animals you loved.
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Hi everyone. I used to be on here but I can’t remember my login or the email I used so I am starting a new one. I am mom to two young adults with cystic fibrosis and other health issues. I have RA and other conditions as well. I had to change my career due to the risk of COVID and my son’s transplant not to mention the kids CF in general. I am an esthetician and makeup artist so I touch people’s faces for a living. So during the pandemic I started thinking what I can do now since I am 50+ and worked cosmetics since I was 17. I have always dreamed of working as a travel planner/advisor/agent. I travelled a lot as a kid due to my dad’s work and I picked up the travel bug while I was still in diapers. I found out that due to the pandemic people are relying more on travel advisors more than ever. Then I wanted to narrow down my specialty/niche. I figured it out, I hope. I have had to figure a lot of things out traveling with my kids, especially our son. Meds galore, some refrigerated, vest compression machines(2),, nebulizers, nebs, feed pump, supplemental feed, tubing, feed bags, plenty of snacks traveling, wheelchairs and fluid at all times. I had to research hospitals in London when we went on my son’s make-a-wish so we would know where to go just in case. A plan A plan B Plan c just in case. Then for my sons transplant which we had to relocate for and my daughter’s make-a-wish. These experiences taught me so much, not to mention seeing what my fellow moms would do in order to travel. So have decided to help chronically ill and special needs travelers and their caregivers. Everyone deserves the opportunity to explore this beautiful World and I would feel honored to help facilitate this. I started my business several months ago and found out there is a great need for this. I have been learning so much and have been working with some clients already, some with challenges and also some great family, leisure & luxury trips. I am so glad I made this change. I guess a few good things have come from the pandemic. I have decided to not charge my clients for medical travel advice. I hope to help as many people as I can.
#Travel #travelagent #specialneedstravel #medicaltravel #sunflowerlanyard #InvisibleIllness #ChronicIllness #CysticFibrosis #Transplant #pancreatitis #ChronicPancreatitis #tubefeeds

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