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It just keeps getting better *VENT**LONG*

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        09-02-2013, 04:49 PM
      #41
    Started
    Quote:
    Originally Posted by Celeste    
    I would schedule the appointment in case you still need it then. Hopefully you can get something done before that.
    Yeah, I will keep any appointment they give me, I'll just do everything in my power to have something done before then. It may be up to 5 months from now before I'm notified of an available appointment, but then the actual appointment may not be for several months after that. Hopefully if I can go to Wellington or even the next town over from me I might be able to get something done sooner.
         
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        09-13-2013, 01:20 AM
      #42
    Started
    Quick update. Still the same not doing any better at all, some days are really bad and I contemplate going to the ER but I don't end up going.

    Dad got sick of the hospital mucking around and has set up an appointment with a very good doctor/surgeon at a private hospital near us, so on the 25th I will be seeing a doctor who helps my nana with her coeliac etc and is generally known to be very good, so we will see how that eventuates.
    Celeste likes this.
         
        09-25-2013, 12:59 AM
      #43
    Started
    OK, so I saw the specialist private surgeon today, and after hearing my entire life story he has said that he is 70% sure that I have crohns disease, but I will be going for a colonoscopy tomorrow (EEK!) to see what presents.

    I have to drink 1L if "Bowel prep" every hour for 3 hours tonight in order to cleanse everything in preparation for the procedure tomorrow. Let me tell you, this stuff is vile. I have a strong stomach, but just thinking about, or smelling this stuff literally makes me vomit, drinking it is even harder to do. It reminds me of chlorine... Except I would rather the taste of chlorine. I'm not allowed any more food tonight (no problem with the headache and nausea/vomiting caused by the drink). Woopee, I'm excited to be getting another test and all but man, this stuff is vile beyond belief.
         
        09-25-2013, 08:41 AM
      #44
    Trained
    I hope they find out what is wrong. Good luck.
         
        09-25-2013, 12:20 PM
      #45
    Weanling
    Big hugs to you, dear.

    I've been battling what we now know is lupus for awhile now, and definitely the hardest part is not knowing. It'll do a number on your psyche, for sure! Also pills are a bummer, but a really good doctor should be able to find you a combination of meds that will work for you long-term, if not short-term. If they don't, try another doctor. They all have slightly different opinions and some will suit your condition more than others.

    Living in a different country I'm not 100% sure how your healthcare system works, sounds like mostly public but private practices exist as well? In those situations I hear that private doctors are almost always better but I don't have a basis for that, honestly. I just know that if they ever switch the U.S. To government-run healthcare I'm moving to a different country. Not a good thing for people like us, particularly when a country has little to no budget. Sounds like you're in to see someone your family trusts, though, which is usually a very good thing! Keep us updated!
         
        09-25-2013, 05:17 PM
      #46
    Started
    Quote:
    Originally Posted by 2BigReds    
    Big hugs to you, dear.

    I've been battling what we now know is lupus for awhile now, and definitely the hardest part is not knowing. It'll do a number on your psyche, for sure! Also pills are a bummer, but a really good doctor should be able to find you a combination of meds that will work for you long-term, if not short-term. If they don't, try another doctor. They all have slightly different opinions and some will suit your condition more than others.

    Living in a different country I'm not 100% sure how your healthcare system works, sounds like mostly public but private practices exist as well? In those situations I hear that private doctors are almost always better but I don't have a basis for that, honestly. I just know that if they ever switch the U.S. To government-run healthcare I'm moving to a different country. Not a good thing for people like us, particularly when a country has little to no budget. Sounds like you're in to see someone your family trusts, though, which is usually a very good thing! Keep us updated!
    Thankyou 2BigReds, it's really starting to scare me now. The not knowing, and the being rushed in for a colonoscopy only a day after the initial appointment, Not that I'm complaining since it would have taken months in a public hospital!
    I do feel terrible though so I can now say I feel for anybody going through colonoscopy prep etc, it's nasty.

    I've heard the word lupus before, but other than knowing that it is an autoimmune disease I know nothing else about it, could you enlighten me? I'm beginning to pick up an interest in all these things and can spend hours googling different things, but the information from Google still doesn't compare to the information from somebody living with the issues. My opinion anyway.

    Yes we have both public and private practises that are completely separate. I'm just extremely lucky that I have health insurance and that my parents are willing to pay the excess of $300. This one procedure today is costing upwards of $4000 so I'm counting my lucky stars that we are in a position to be able to go through with this when many people can't. And yes, the private doctors are always better, hands down. The specialist doctor/surgeon I'm under now is also caring for my grandad and his wife, he has skin cancer and a myriad of other issues, nana has coeliac disease and some other issues also. This doctor also saved my uncles life after the public hospital wrote him off as a cancer patient and gave him months to live. This doctor rushed him to Auckland and had half my uncles stomach removed in what was found out to be a huge stomach ulcer, and also pneumonia. If he hadn't had the surgery he would have died, now 6 years later he is right as rain.
    So this guy definitely knows his stuff, which is reassuring my nerves a little bit. He also told me it's not in my head and he won't stop until he has a definite diagnosis. I went to high school with his children and he kept stressing how important confidentiality is to him so his sons won't know, not that I care who knows at this point as long as something is found out!

    He also said "don't even get me started on public healthcare" he used to work for the hospital but opened up his own private practise a few years ago. He hates that hospital as much as everyone else does and stared at me in utter disbelief when I told him that they had put me on meds specifically for crohns when they don't have a diagnosis. He also stressed the importance of not taking the ibuprofen I was prescribed for the exact reasons mentioned earlier on this thread, I don't remember who by.

    Ok, it's 9.20am now so in 2 hours I will be admitted in to the private hospital, and an hour and a half after that I should be getting a general anaesthesia and having the procedure started. I won't deny it, I'm terrified. Mums driving me in otherwise I will not be going.
         
        09-25-2013, 06:08 PM
      #47
    Trained
    As long as they drug you up, the colonoscopy is no big deal. The prep is the bad part. It won't leave you in pain and it will be over in no time. The only issue is that all that yucky stuff you drank will make you feel bad for a day or two until you can get your electrolytes all back in balance.
         
        09-25-2013, 06:29 PM
      #48
    Started
    Quote:
    Originally Posted by Celeste    
    As long as they drug you up, the colonoscopy is no big deal. The prep is the bad part. It won't leave you in pain and it will be over in no time. The only issue is that all that yucky stuff you drank will make you feel bad for a day or two until you can get your electrolytes all back in balance.
    Yeah the surgeon said I will be under a general anaesthetic because apparently teenagers don't handle sedation very well, so my age works in favour on that one for me haha.
    Oh well, I've managed a night and morning (plus every other days that I feel bad)of it I'm sure I can deal with not feeling great for a little while longer, but I do have a huge craving for dark and milk chocolate, I even dreamt about it in what little sleep I had last night!
    Celeste likes this.
         
        09-26-2013, 08:06 AM
      #49
    Started
    I think this may be turning into more of a diary than anything but I'm in an amazing mood and have had a strangely brilliant day.

    NOVEL WARNING

    So, its now 11.30pm and I can't sleep, yay for normalness I suppose because I never have slept well. If I doo then I'm either sick or drugged up brilliantly.

    I have extreme agoraphobia and have done knowingly for years, it completely rules my life to the point where I don't go to parties, I don't go in to town when it's busy, if I go in to a new place the first thing I look for is all my possible escape routes etc etc. I never even went to school assemblies in high school because sitting in a big hall with several hundred kids packed in and schoolbags blocking my escape routes just sent me over the edge. For the ones I did have to go to (eg prizegiving) I would sit with a class that was right by the door, on the end seat so I had no obstructions to my exit if I needed to get out.

    I had myself thoroughly convinced that I was fine this morning, I walked into the hospital and kept myself convinced that I was fine (I was actually shut off in dream land pretending I wasn't in the hospital-that's my coping mechanism a lot of the time) I got shown to my room and the nurse came in almost straight away and she was just lovely, I managed to pull myself out of my dream land without panicking and she made me feel completely at ease, and she had a nice sense of humour which is good because I tend to joke around a lot when I'm trying to cope. Went through all the paperwork and questions etc and that was fine, I had my own private bathroom attached to my room (thank goodness!). A number of doctors and nurses passed through my room, each of them were great and made me feel comfortable around them as much as possible. I warned all of them about my agoraphobia and what happens when I have panic attacks and that I was likely to not cope very well. The anaesthetist said that was cool and he would have some special sedative set aside in case I needed them.

    1.30pm I got taken in and I had pulled myself back into my dreamland to cope. (wearing a button up gown and a nappy type thing that I will not forget, YUCK!) As I was being wheeled out of my room mum said "everything will be fine, it's ok" and bam - verbal trigger. I got snapped out of dreamland and there began the panic attack. Not mums fault at all, she didn't realise I have verbal triggers like that as well as the other triggers, I should have pre-warned her and asked her not to say it but it slipped my mind.
    Down the corridor we go, I'm paralysed by my concentration to keep breathing normally, I can't speak or hear anything because I'm focusing so hard on my breathing, I tend to either hyperventilate to the point where I vomit(cue the emetophobia issue here) or I stop breathing completely and pass out, yay!
    My head was screaming to me to get the heck off that bed and run like crazy, just get out, don't go through those doors, this was a stupid idea, why did I turn up in the first place. Leave now and it will be fine. But being paralysed by my concentration on breathing stopped me from doing that.
    As soon as I went through the doors just before the theatre I started crying hysterically in silence and my entire body was shaking. I had to get up and walk from my bed to the theatre table, but I couldn't get my legs to cooperate (still concentrating on breathing) so I had one guy on one side and one on the other since I got out of bed and promptly collapsed on the floor from fear and dizziness(dizziness is normal for me) so basically they carried me in, all I had to do was keep my feet in contact with the floor.
    They layed me down on the table on my back, arms outstretched for the monitors on one arm and the cannula in the other arm. It took them 2 attempts at putting a cannula in, which has never happened to me before as I'm told I have amazing veins, maybe they hid in fear
    As soon as the cannula was in successfully in went the sedative. No questions asked. I was exerting as much control as I could over myself but I was very quickly losing the battle and almost got up and ran at this point, not being able to concentrate on breathing anymore.
    So anyway, bam, in goes sedative through IV. Not 5 seconds later I was laying there in bliss. Completely happy and comfortable looking at the pretty overhead lights, feeling like I was floating on a cloud. I was able to relax and breath completely normally, no more panic attack, I could talk, I could hear, but I was completely happy as larry.
    Then they hooked me up to a saline drip and stuck the anaesthetic in through my IV line. Night night. I don't remember falling asleep this time, I just remember waking up in recovery and the nurse asking me if I wanted mum in the room, I said "no I'm still in my happy place" (where did that come from! I didn't even choose to say that! Good drugs!)
    I did have an ET tube during the procedure, I was told that, but I went to sleep with no tube and also woke up with no tube, just an oxygen mask and the worst case of gas I've ever had haha! She told me not to be ladylike and just let it go, to which my response was "well darn, I've never been ladylike about anything in my life!"
    I was in theatre for an hour, and in recovery for 35 minutes. The surgeon come in to my room after I had woken up properly enough to comprehend serious questions and not answer them like I was high.
    He said that the colonoscopy was not normal. Definitely not normal. But he said it didn't absolutely scream Crohns at him. He does think I have Crohns disease, but he has sent away biopsies which will be back in one week just to be sure.

    When I woke up after a snooze in my room, I woke up to an amazingly cute stuffed cow and penguin in front of me, mum had gone out to find slippers at the shops and had come back with the stuffed animals, a nice pair of loose trackies, some new socks and a really nice hoodie! Bless her, she didn't have to do that!
    And the surgeon gave me a little red box with gold ribbon on it saying "Get Well" in nice writing, inside it held 3 dark chocolates with a slight hint of mint flavour. I've eaten half of one so far, thought I had better not overdo it, I gave mum the other half.
    Then I met a new nurse who had just come on to her shift and she was lovely too, she was really funny and light hearted, she was one seriously compassionate woman, and she went out and got me some amazing sandwiches and a collection of coffees/teas and drinking chocolate. I don't drink coffee so I had the drinking chocolate with only a teeny bit of milk. But man, who knew hospital food could get so good! It was amazing, better than most cafes! And better room service than a 5 star hotel!
    I was feeling amazing at this point, both physically and mentally better than I have done in months. I am almost excited to possibly have Crohns Disease, purely because it is so close to a diagnosis, which will then mean I can get proper help and carry on with my life as well as I can.

    I then got home, already feeling pretty good, and mum cooked some fresh crumbed hoki for dinner so I had a small piece of that. Then I'm sitting down using dads iPad for facebook and he goes "can you turn that off for a minute?" "uh, yeah sure?" he then proceeds to hand me this gorgeous gift bag, and inside is a brand spanking new white 16gb iPhone 5, colour me shocked. I had no idea what to say apart from "OMG" and "thankyou" and his reasoning behind it was that he thinks I've deserved it for going through all of the problems I have gone through over the past 3 years. I was just astounded and I'm still struggling to believe that I have an iPhone 5, I always wanted one, but I was prepared to save up and get one for myself, but dad thinks I deserve to just have one like that? I won't complain, but I'm really not sure I do understand, both mum and dad have already done so much for me and I couldn't ever thank them enough, but to put this phone on top of it all makes me feel like a seriously spoilt little brat, although my secret theory behind the iPhone is that now I have to send dad Candy Crush lives, since I couldn't on my LG Optimus


    And in other good news!
    I got a phonecall on my way to the hospital this morning about my orthopaedic surgeon appointment on October 17th for the consult of the surgery on my thumb... well, they have bumped my appointment forward! To tomorrow!! So tomorrow at 2pm I will be talking to a surgeon about having an operation on my thumb in the very near future hopefully. It feels like everything *might* just be coming together now. But I'm scared to get my hopes up.

    I'm sorry, that is a huge novel, but even with the panic attack almost ruining everything, and having a probable lifelong disease diagnosis, as well as pending surgery on my thumb, I kind of feel on top of the world, so I'm going to make the most of that while it lasts. Because I know it won't last forever, so why shouldn't I make the most of it?
    Skyseternalangel likes this.
         
        09-26-2013, 08:33 AM
      #50
    Green Broke
    Wow! That was quite an adventure, wasn't it? So nice to hear that you feel blessed to have such a great family & the phone is truly appreciated & unexpected. Hope things keep improving for you & you feel much better very soon. Good luck on getting your thumb fixed now. Please keep us updated.
         

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