I'm going to try to make this one as short as I possibly can, but suffice it to say over the last few days since my mom hasn't been working my father has been sitting around also not working. And so, since I am here, I have had literally NO alone time. Now, since I … Continue reading Why is asking for alone time such an awful thing? and as a secondary question, why are so many people so needy that they don’t need that?
Author: Beth Poste
I have been living with chronic illness since I was 2 months old. My first "formal" chronic illness diagnosis was Behçet's Disease - I was 17 at the time. I was later diagnosed with Common Variable Immune Deficiency (I more or less led the doctors to that diagnosis - that story is for another time!) and those have been my "primary" two illnesses. I have many other "secondary" diagnoses such as seronegative Rheumatoid Arthritis, Chiari 1 Malformation (a result, I believe, of the Behçet's causing aseptic meningitis time and again since it had never appeared in brain scans before I was about 24-25), osteoporosis, compression fractures of the thoracic spine, and many others. I know what it is like to feel as if you have lost years of your life that you can never recover from illness and the many restrictions it places upon you in your everyday life. I just want you to know that I know what it is like and I have been there through every period of my life - you are NOT ALONE! Please do not hesitate to contact me if you ever need someone to talk with or someone just to listen to you - I am always here! Thank you for taking the time to read this and my other posts and I hope you are having a happy and healthy day no matter where you are in the world! Take care.
feelings.
I AM VERY ANGRY. I was bullied TERRIBLY all my childhood ... and I have been betrayed by everyone who claimed they would never abandon me when I first became SO deathly ill in my early 20's. Long-term relationships (we're talking 5+ years), every friend I had managed to keep from the aforementioned bullies who … Continue reading feelings.
Fundraising to help save sparky puck
If I have not made this obvious enough, I will state it very clearly and succinctly here -if Sparky Puck were not here, I wouldn't be either.And so I ask ... why is it that the MANY people I have helped not even just recently by doing things like giving my personal doctor's information or … Continue reading Fundraising to help save sparky puck
I am not ready to lose sparky puck … and he is just starting to feel good after a year. he deserves everything.
Today I finally made an appointment that isn't a month+ out for Sparky Puck to get his radiation / other treatments for adenocarcinoma. This is not going to be an inexpensive treatment course, and I can't say much before I just break down, but I wanted everyone who reads this to know that I am … Continue reading I am not ready to lose sparky puck … and he is just starting to feel good after a year. he deserves everything.
A Brief history of the last two years
Late last 2020 - I had finally reconnected with one of the few friends who had not dumped me in the proverbial friendship garbage pile during the time when I was so ill, fighting for my life (I have spoken about this before but, in short, I lost just about every friend that I had … Continue reading A Brief history of the last two years
We need another miracle … i don’t ask whatever the higher power is for much … but please, we need a miracle.
I have been "assigned," for lack of a more exact phrase - too much stress and sadness - to start my blog up again ... so here I am!I will come back tomorrow and try to give a brief rundown about how ... awful ... the last few years have been ... and those years … Continue reading We need another miracle … i don’t ask whatever the higher power is for much … but please, we need a miracle.
Physical Involvement
I apologize first and foremost because I am going through mental HELL right now and I am in a lot of pain. I have been crying for the better part of now nearly 36 hours and I am so beyond tired and so beyond fed up with it all that I (also very literally) cannot … Continue reading Physical Involvement
An Anecdote
My mom had a terrible childhood; I will not say too much about that because I am currently working on an interview "series" with her to hear her whole story and get it in writing. But to make a VERY long story short, she was adopted as a baby when her biological mother became pregnant … Continue reading An Anecdote
“Oh, The Places YOU Will Go …”
This one is breaking my heart a little bit. I sat down with my leg up and started watching a random film on Netflix which takes place in Great Britain ... and I swear I have been to some of the places in some scenes of the film. That summer was one of the best … Continue reading “Oh, The Places YOU Will Go …”
Plagiarism
So I have recently encountered a very troubling problem - the content from this site is being plagiarized by others with one of the disease I have and said "person" is using the content as if it were that person's content and that person's story. This has been extraordinarily upsetting to put it mildly.At any … Continue reading Plagiarism
Living with Chronic Illness - Thoughts on Life and Life Advice from a Spoonie's Perspective 