Has anybody heard from Jaylock? I have sent her a couple of private messages but she hasn't replied. Has anybody else made contact with her? Last thing I heard she was in hospital and waiting for a colonoscopy, going through hell with constant autonomic dysreflexia, bladder and bowel problems. Curiously, my wife who knows absolutely nobody on this forum remarked: "Have you heard from that lady who has problems with her blood pressure?" That was yesterday evening. It occurred to me then that we — the people on this forum — are like neighbours. We care about each other. We look out for each other. Yet none of us really know who we are. It is a strange world, and a curious phenomena to become attached to people you don't really know. Another example of this came at the beginning of the week when a prominent member of the forum, who hadn't seen any recent posts from me, sent a private message to ask if I was okay. I was touched. So, Jaylock, are you okay? I am sure I'm not alone in hoping that everything is okay.
Post by kilg0retr0ut on Aug 25, 2017 6:28:25 GMT -8
What you said Mike, I feel the same way. I was so relieved when she posted last time, I was hoping they were getting close to leveling things out. I wish she could get transferred from the E.R she's in, it didn't sound like they knew which end was up. She's really tough, I think she may need some time to recuperate being through all she's been through lately.
I'm closer to people here because we understand each other as no AB can. How many AB's do you know that would cheer for a successful bowel movement.
We have a bond of some sort being in this together. Well thats how I feel, maybe I'm being sappy but I really do care about our members.
Exactly, kilgoretrout. She is in an ordinary or general hospital, not a specialised spinal unit. It must be hell for her. You are so right about understanding each other. What an excellent forum this is, what a fantastic bunch of people.
People do drop off the internet when in hospital or quite ill. It can be risky to keep your phone with you in the hospital, and wifi is often unavailable. Giver her a week before you panic.
You are very lovely to be thinking of me, and I'm so sorry to worry anyone. My hospital stay was a nightmare and it took me quite a few days just to recover. My hands were cramping so badly, probably from electrolyte imbalance, that I couldn't even hold a cup properly for a few days, let alone type. I slept for almost two days after I got home. Just stayed up long enough for Bladder and Bowel needs and a few bowls of soup. I had absolutely nothing solid to eat in the hospital from Wednesday morning to the following Wednesday night when I got home. Having prided myself on eating only very minimal processed foods before being admitted, since leaving the hospital I've been devouring Haagen Daz Strawberry Ice Cream and Walkers Non-such English Creamy Toffees, along with bags of Kettle Sea Salt potato chips. I'm bloody starving! I'll update the nightmare hospital saga on the other thread, but all tests came back okay so I'm back where I started.
Well, at least you are still with us, Jaylock. So good to see your post and to know you are recovering. Disappointing that you are back where you started with no definitive diagnosis as to what could have caused your condition. Hope you continue to improve. Thank you for messaging.
Kettle Sea Salt potato chips, yes! Haagen Daz ice cream, double yes! And I'll have to look into those Walkers Non-such Creamy Toffees. I've never seem those. Maybe they don't get shipped as far as 'way down here in Texas. But, as you say, I, too "pride myself on eating only very minimal processed foods". (Note to self: hide some food in my hospital bag.) They let you get low on electrolytes in the hospital?! What can I say? I guess, "Congratulations on surviving your stay in the hospital." What about the insect bites you had on your legs? Are they healed?
Insect bites turned out fine, vintage, So did the colonoscopy and the barium GI. I'm still miserable, but home at least. BP up again yesterday morning, this morning, and the night before. Each time it was caused by a bout of very loose stool needing to get out. This wasn't possible without some sort of gravity and stimulation. Since coming home my stool is very loose and program unpredictable. I started using the Magic Bullet again after my first hospital stay two weeks ago, something I stopped using many years ago due to an allergic reaction. The doc seemed to think the reaction might be cured after so many years and recommended I try it again for a better evacuation. It was okay to start, and does work, but could I still be having that reaction? Could that cause loose stool? i feel as though I'm damned if I do and damned if I don't. I'm in so much discomfort I just can't even get out of bed most of the day. Have finally stopped eating mega doses of ice cream and sugar. STILL waiting for a GI appointment in Boston. I have to go back to work next week and have no idea how I'm going to be able to manage that. I keep waiting for life to get back to normal again, but I've lost sight of what that means. I need to stop moaning but am so frustrated right now and don't know where to turn next.
Post by kilg0retr0ut on Sept 2, 2017 4:37:23 GMT -8
Seems like if you were allergic before, if not right away you may be allergic again. Can you be allergic to something and then not be? Hmm. Sorry your having a difficult time, you have every right to be feeling this way. Can you take more time from work? I'm thinking you need to get yourself in a better place before you tackle going back.
I'm hoping Boston may be able to find out whats going on, something has to be causing this.
Jaylock, I had hoped that your blood pressure would have come down by now. It sounds like your bowels are stimulating your autonomic system into overdrive. Could be time to think about colostomy. It's a huge step but it could transform your life. Would this be an option on your healthcare system? Could you have it done for convenience sake, rather than having to have it done because it's diseased?
Seems like if you were allergic before, if not right away you may be allergic again. Can you be allergic to something and then not be? Hmm. Sorry your having a difficult time, you have every right to be feeling this way. Can you take more time from work? I'm thinking you need to get yourself in a better place before you tackle going back.
I'm hoping Boston may be able to find out whats going on, something has to be causing this.
My thinking, too, kilg0retr0ut, but you sometimes get to the point where you grasp at straws and will try anything. Yesterday I omitted Magic Bullet and Peristeen. Felt well enough to get up and actually go to the store yesterday afternoon. Today BP is also good but still in lots of pain. Probably from all the overuse. Talk about raw. I started taking zinc yesterday. I remember Wavewolf saying it was good for healing, and when I looked it up it's also good for all sorts of gut issues, plus issues dealing with hypothryroidism - which is one of my big problems. I'm wondering if I stop trying to treat symptoms and concentrate on cause, I might be better off. Hypothyroid can cause lots of gut issues, so is that the main cause (just thinking on paper here). Doctors only want to treat symptoms, and I've always known this. Why do still listen? Perhaps a call to an endochronologist on Tuesday for advice on diet and meds?
Yes, mikeq, I am also seriously thinking about a colostomy. I can't do this much longer. I would actually be quite lovely if I could just order a colostomy from Amazon and get a two day delivery, instead of having to wait for appointments and consultations and training and surgery and recovery. Be so nice if it was just over and I could jump happily out of bed every day and do something constructive! I read your short story about your colostomy operation and, apart from the bruising episode, it sounded like a marvelous experience (at least the outcome). Time for more research.