I’m new here!
Hi, my name is Katie. I'm here because my husband was diagnosed with chronic illness in 2019 and I want to learn more and find community as I accept this new normal.
Many paths built upon various terrain have updated my perspective quite radically. Within many battles with the external world, I have developed a rich internal world. I would like to share how it sounds and feels and tastes and smells and what a sight it is. #BipolarDisorder #ChronicIllness #ADHD #CysticFibrosis #SensoryProcessingDisorder #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #ExocrinePancreaticInsufficiency #cysticfibrosisrelateddiabetes #Diabetes #AdrenalInsufficiency #MentalHealth
Hi, my name is Jillian :). I’m new to The Mighty and look forward to sharing my true… YES, it IS true, story!
I’ve had EPI for about three years now. Given it’s the pancreas and that i found out about it at the same time as others conditions and accompanying cfs ans fibromyalgia, and I get a wee bit freaked out. It means 90% damagae, and there’s no cure.
I’ve been researching stem cell research to see whether it will help, also for the CFS and fibromyalgia. Do any of you know about these treatments, or ideas outside the box? My GI has referred me to a dietitian.
Thank you so much and sending wishes for a great,
I’m thinking about starting a patient advocate service for pancreatic sufferers! Whether it’s from chronic pancreatitis, acute pancreatitis, pancreatic cancer or some where in between! I have a degree in social work and I’ve suffered for 5 years now with some form of pancreatitis! Or should I say everything but pancreatic cancer!!Any advice on where to start? #ChronicPancreatitis #PancreaticCancer #HereditaryPancreatitis I #ExocrinePancreaticInsufficiency ##pancreaticdivisum
I think the scariest thought is not that I have to live with chronic illness now, but that I can trace my symptoms back years and never noticed it. Perhaps I never wanted to notice it.
My life’s purpose was the hustle - to get good grades, be the best, get a good job, and work hard to pay my parents back for the tremendous sacrifices they have made for us. Everyone struggles from time to time. I’d get over it.
Noble? Perhaps. But it’s true that you can’t help others when you are running on empty. And I got to the point where I had not only run out of gas but I’d jumped out of the car and started pushing it up the hill only to keep going.
A passing statement uttered by my doctor has made me pause and kept me up at nights. I was lamenting how suddenly all of this occurred to me, what I had possibly done wrong, and was there anything I could do to fix it. If it began suddenly, it meant that there was a beginning, a reason; and reasons have answers and all beginnings have an end — don’t they?
“If you think back, you might see that you’ve had issues all along.”
I did. He was right. But I forgot them for a reason. I avoided them purposefully, ignored them faithfully. Because I didn’t want to live a life focused on the struggle. Not then, and not now.
As I lie awake again tonight, completely exhausted and unable to sleep, I’m brought back again to those words. And the memories I had eagerly attempted to erase mock me. I should’ve seen this coming. If I had just taken better care of myself, maybe I could have defied my genetics, my fate.
But then, I realize that I have the last laugh. Because I am here; in spite of the pain, in spite of my past, and in spite of my problems.
I am here and I am stronger than ever.
I am mighty.
#iammighty #AutoimmuneImmunodeficiency #AutoimmunePancreatitis #ExocrinePancreaticInsufficiency #ChronicPancreatitis #PrimaryImmunodeficiency #sjogrens #ChronicIllness #ChronicPain #CheerMeOn #Vitiligo #CrohnsDisease #CeliacDisease
After a strangely full week of people telling me how I should be feeling, it took a while for me to realize what really bothered me about what these friends were saying. It was nothing different from what I would say to cheer myself up, yet this “advice” was completely unwanted and unwelcome in that moment. It made me feel guilty for daring to mention a struggle I was going through out loud. Although I have to assume they were well-meaning, it seemed like they were attempting to move the conversation along as fast as possible and dismiss any feelings I had. But it was MY situation. They are not living my life, my pain. And it took me a couple of days to realize that what bothered me was not their words, but the acceptance I felt I needed from them. They won’t be the only people who are skeptical of my illness or deny my situation. As a Christian I find my acceptance in Jesus alone, and my own acceptance of myself after that. #InvisibleIllness carries a weight unlike any other. I don’t need to carry around the negative opinions of others along with it. #smallwins #CheerMeOn #AutoimmunePancreatitis #ExocrinePancreaticInsufficiency #AutoimmuneImmunodeficiency #sjogrens #ChronicIllness
So much pain. Its getting worse as the days go by. I do not know how much more I can take. Im thankful Johns Hopkins is taking my case. I dont want to live like this anymore. My scans and blood work keep coming back normal but the level of pain im in isnt. I want answers to help manage my pain. #hearme #ExocrinePancreaticInsufficiency #epi #Gastritis #IBS #Gastroparesis
I often wonder what I’ve done
To have earned the pain I have won.
Being this ill is no fun.
My body has been overrun,
By diseases, which have spun
Pain and nausea, by the ton.
Oh, what I’d give if I could run
From the pain, I’d be stunned.
On my knees begging, “Help... someone.”
But there’s no answers, nothing, none,
From the sky, with moon or sun.
And like a bulletin leaves a gun,
I still wonder what I’ve done ...