aileen's Status Updates

Oh @aileen, I am SO sorry to read how much you are suffering. You are really going through it at the moment. You are definitely not alone in feeling the way that you do. The impact that chronic illness can have on the body, mind and everything going on around us can be a LOT to cope with. Please know that you can come here anytime you need to vent. So many people here understand exactly how you feel and what you're going through. I am sending you the biggest (but most gentle!) hug <3 How are you feeling today? -Catherine, Community Moderator

Oh, Aileen, my heart ached reading your post...there most definitely are others out here who feel like you. You are in the right place when it comes to connecting with people who really "get it." And even get how loved ones struggle with being understanding. I hope to see you again tomorrow!

Thank you, so, very much, Cathy. I haven't been on the site, since my 1st post . Things have been, pretty, awful, and, I've, just, been trying to live ( day to day). My , Health , Ins co, couldn't find an " In Network", Pain Mgmnt, Dr, within 100 miles, driving distance!!! I've spent , literally, hours, trying to find someone who would accept me, as a patient. I won't mention, any, names, but, my, last, Dr, unceremoniously, DUMPED ME!!!( with, no , oral, meds and an empty pain pump!!!) Whatever happened to
" thou shall do no harm!!!". I was, hugely, overmedicated, so, every time my file went out, it would, quickly, be returned, with a, curt, denial!!! Eventually, my, wonderful, husband, took matters into his, own, hands. He wrote a, very poignant, letter, ( truthfully)documenting, what had happened, to me and our family, when these illnesses took hold. He didnt, at any time, berate my, former, dr, but, I sobbed, as I read , through, what he had written. To give you a, general, idea, quote
" all my wife wants, is to , not, be bedridden, to be able to get up, have , some, semblance of a life, and, to be able to hug her children, again!!. She's too young to give up , but, this is killing her, and, draining the life from her. She lives for her family , and., children.) I , obv, won't name the Dr, but, surprisingly, the next day, he called ( in person), saying that he had rethought his decision, and, decided to accept me, as a patient!!! My husband had accomplished, what a, huge, Health Ins, Company, couldnt. He had made me into " a person", not, just, a file, full of notes, and, records of prescriptions!!! I knew I was being, dangerously, overmedicated. At my, 1st, appt, I took, 40x100mcg, fentanyl, patches. I handed them to my, new, Dr, and, asked him to dispose of them. It wasn't about the medication, it was about me, and, my honesty, my awareness, and, I needed him to know that I, alone, had weaned myself , down ( although my, original, Dr, kept on prescribing). His mouth dropped open, as he sais, " Aileen, there's enough here to kill, several adults and children. I , already, knew that, and, that was the reason behind me, giving them to him. Drs aren't, always, right, or, honest!!! Anyway, he's treating me. It's, still, an 80 mile ( round trip), but, at least, it was , something, positive.

Hi Rebecca, thank you for your, kind, heartwarming, message. I've had, many, ups and downs, since I , last, commented. My husband had to go to the UK, and, was gone for, the last, 2 weeks!! ( His mum is 87, in a , Nursing, Home, there. And, he goes, every, 3 months. ( she has dementia, and, is nearing the point of, not recognizing him, or his sisters). So, I was left, in charge of a 15 year old , son, complete with, raging hormones, etc. There were times that, I thought I would die!!! Simply, getting him up, out to school and, prepping dinner, doing laundry, and, cleaning, absolutely, drained the life out of me. It didnt, actually, dawn on me, how much my husband, actually, does for me, and, since he came back, I've, barely, managed, out of bed. Yesterday, I slept the, entire, day. I'm overwhelmed with guilt, at not being able to , even, eat with my family. As well as my, other, illnesses, I suffer from ADHD. Even my, stimulant, medication, couldn't rouse me. I slept all day and all night. ( apart from my, regular, nightmares, which I wake, screaming and sobbing, from). I'd be interested to know if anyone , else, suffers from night terrors?? I was informed by, aforementioned, teenager, that I, simply, was t trying!!! It's, so, difficult, to bite my tongue. He doesn't need to hear about my " daily, chronic, pain". ( He's heard it, already, many times). Anyway, hopefully, today will be better. I think that this site is, really, a blessing. Every one of us knows how sick , our , close, family are of hearing about our pain!!!

Oh my gosh, @aileen. Thank goodness your husband's letter made a difference. I am sad that you had to go through all of that hassle and stress though. It is really not fair with everything else going on. I'm sorry that you're having such a difficult time 🙁 I wish there was something I could do to help. When are you next due to see the doctor? I can imagine the trip takes a lot of recovering from !

I noticed your comment to Rebecca - I had night terrors as a child, pretty much every night. I had/have no memory of them but my parents tell me I would scream the house down in my sleep every night. I haven't had any as an adult (that I'm aware of!). Do you know much about them? I haven't ever met anyone else who has had them! I hope you don't mind if I send you a friend request? <3 -Catherine, Community Moderator