It just keeps getting better *VENT**LONG* - Page 6
   

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It just keeps getting better *VENT**LONG*

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        09-26-2013, 08:59 AM
      #51
    Started
    Quote:
    Originally Posted by Cacowgirl    
    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.
    It has been an interesting adventure so far that's for sure I'm just extremely thankful for everybody that has been supporting me both online and in real life, it really does mean a lot and it keeps me going a bit better. The adventure isn't over yet I'm sure, since we are still waiting on biopsy results to 100% confirm the probable diagnosis, now I'm just a little scared that after the doctor being so confident that it is most likely to be Crohns, I'm not sure what I will do if we get the results back saying it isn't. But he did say he won't stop until we have a definite diagnosis so that makes me feel better either way.

    I'm also really thankful for how understanding, kind and compassionate everybody at the private hospital was and how well they prepared for and accommodated my phobia, after my public hospital experiences and my last anaesthesia experience in a different private hospital, this one was a welcome experience even with the panic attack which they managed very efficiently. Everybody at the public hospitals around here are cold and non-caring(with the rare exception of course), if you have a phobia they literally strap you down and force you through the procedure anyway which only makes it worse.

    I never expected the phone, because while my parents knew I wanted one, they also knew I was quite happy to save for it myself, so this was definitely a welcome surprise. But while I do feel really thankful for having it, I kind of feel bad because my parents do pay for everything for me, I mean everything. If I want something, I will end up getting it. But I don't whinge and moan until I get it, they know what I want and sometimes the things I want just appear and I'm extremely lucky to be in a situation where that does happen, but I feel guilty because I have so much while so many others don't. Even my medical insurance, I feel guilty for being able to go in to a private hospital and get it sorted after months of dealing with issues, when some will go years and years, or even most of their lives not knowing or not being able to afford the treatment and care they need, including a good friend of mine who is suffering very similar symptoms but has been dealing with them for many many years, I wish I could help her and I hate seeing her go through what I do day in and day out, knowing she has been like this for so long with no answers and I am getting help after only a few (long) months.

    I really hope so too, and thank you for the support.

    No doubt I will keep updating this thread, even just typing it out makes me feel a bit better mentally, and not so overwhelmed with everything that is happening.

    I am also going down to Christchurch on October 5th with my boyfriend of 4 years, our 4 year anniversary is on October 10th, we fly back to the north island on October 12th, and go straight to opening night of speedway that night, then go and watch Bathurst the next day, phew that's going to be a long week! But I'm looking forward to it, minus the flying part.... Once I'm on the plane I have no exits, so I'm going to need some good medication on board, and i'm extremely lucky to have my boyfriend be so amazing. Every hospital stay I've had he has been there, every time I need something he does it, if I'm sick he stays up all night with me, he would do anything for me and I will do the same for him, this guy even goes shopping with me without complaining!! So I have no doubt that he will play a big part in me coping on the airplane since he has been on them many times and I have never been on one. He even said that if we need to we can cancel our flights home and drive back and take the ferry (if he buys a car down there) since I have been on a boat before and that didn't seem to trigger my agoraphobia.
    -I'll stop gushing now
         
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        09-26-2013, 04:49 PM
      #52
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    Quote:
    Originally Posted by HollyBubbles    

    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?
    That's so awesome that they went above and beyond to all care for you after that ordeal and that your appointment will be sooner.

    I like the way you write your 'journal' and I'm pleased that things are looking up for you!
         
        09-26-2013, 07:58 PM
      #53
    Started
    It absolutely is and I'm so glad we finally found good help in this place. I go back to see him next week for results so fingers crossed we get a definite diagnosis. Mum is planning on getting him some red velvet cupcakes as a thank you to take to the next appointment there is an amazing cupcake shop in town... Pity I can't eat them lol but that's ok!

    Thanks, I find it helps me get my thoughts together after being so overwhelmed all the time. I tell it like it is from my own view and I can organise my head since I can add bits in or take them out wherever I please. I really do enjoy writing and reading and have plenty of time for it at the moment:)

    I have gotten rather addicted to true blood and the vampire diaries and Sylvia day books lately... And Pinterest haha.
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        09-26-2013, 09:24 PM
      #54
    Showing
    Quote:
    Originally Posted by HollyBubbles    

    I have gotten rather addicted to true blood and the vampire diaries and Sylvia day books lately... And Pinterest haha.
    True Blood is amazing!!! I love that show, the season ending was weird though.. but still cannot wait for it to resume!!!!!
         
        09-26-2013, 11:02 PM
      #55
    Started
    Quote:
    Originally Posted by Skyseternalangel    
    True Blood is amazing!!! I love that show, the season ending was weird though.. but still cannot wait for it to resume!!!!!
    Haha yes it is! I read all the books first and I own the last 3 in the series.
    A friend of mine started my Sylvia day addiction by giving me the book "bared to you" to read. One night I took to finish the book... The next day I bought the first and second book off trademe haha!

    More good news!!! I DON'T have to have surgery on my thumb!!! The surgeon said that the ligament has most likely reattached itself judging by the stability of my thumb and the likelihood is that the repaired ligament is still scarred and swollen. So.... More needles! Because I really needed more of those! He gave me a cortisone injection in my thumb and oh boy that brought tears to the eyes haha. Nowhere near as bad as the cannula attempts yesterday though so I was happy. I will see him again in 8 weeks for a check up and possible second injection
    Posted via Mobile Device
         
        10-01-2013, 07:17 AM
      #56
    Started
    Ok, so right now there seems to be an internal tug-o-war happening in my intestines and it hurts like crazy (like doubled over almost vomiting from pain crazy). I've taken all the drugs i'm allowed to so I guess I'll be sleeping on the couch again tonight since any movement feels like I'm being torn from the inside out! It hurts quite badly and I'm not sure what did it, though I actually have a suspicion that it may have been the canola oil on the potatoes I had with dinner tonight??? Or maybe the very small piece of steak that I had. I really don't know
    The nausea is also pretty extreme which doesn't help at all.

    Tomorrow I am getting a haircut at 9am so lets hope I am better and can make it to town for that, I was really looking forward to getting my hair cut.

    Also tomorrow I *should* be getting a confirmed diagnosis at 4pm, I'm really hoping there is a confirmed diagnosis, otherwise I may be at risk of having a mental breakdown... Actually, I'm at risk of having one anyway but yeah.

    It's 12.05am and I am shattered, but with all this pain being so extreme I can't sleep, so horseforum and pinterest it is to try a distraction tactic (not working)

    In other unrelated news, today was the first time I managed to go outside 10m away from my front door to see my horses. I get there and uncover both of them and start to work on brushing out everything that is matted into their new summer coats since they haven't had rugs off for a long time now (my bad). That took it's time, and then I went to release Mitch and bam, he's 3 legged lame. I hadn't realised since DJ walked up to me first and I didn't take any notice of him while I was brushing her, plus I didn't have to move him to tie him up for brushing.
    My immediate thought was a hoof abscess, I picked out the hoof and there was no stones or other hard debris in there so I touched all around his hoof and there was a rather large soft spot and he jumped on the spot as I touched it so I knew that was it. My farrier lives 6 hours away and I am going away on Saturday for a week so I needed this sorted right now. Vet come out, confirmed my abscess theory, the abscess was huge and burst all over the place. He packed the hole with cotton wool and triple antibiotic ointment then wrapped it up and whatnot. He then gave him a shot of penicillin and asked if I was comfortable giving him the shots, yep that's fine. He showed me his preferred method anyhow. I know the procedure and the risks and what to look out for and when to ring a vet right there and then (sadly I also know when a shotgun is needed), he has had penicillin before and was fine so no problems, I only have to give him 2x 25mL shots, and he is brilliant with shots, I can walk up to him in the paddock and stab him with it and he won't flinch at all. I feel so guilty though, I haven't been well enough to check on him closely and I've only scanned over him while he's been grazing and saw no issues, so I have no idea how long he's been sore! My poor boy! He was so good while it was being dug out though, you could see that it hurt, and he set back on his haunches with his neck and shoulder muscles rippling several times but he never once lashed out or tried to leave the spot he was in. He was very patient with everything so I'm very proud of him considering the spring grass has arrived and most other horses have their heads screwed on backwards right now!

    I am now watching Teen Mom 2, Body of Proof, Jono and Ben at 10, and 7 days to pass the time until I either fall asleep or the pain subsides. -_- Ugh.
         
        10-03-2013, 03:30 AM
      #57
    Started
    Well, the colonoscopy biopsies apparently come back clear, so with no definite Crohns diagnosis I have no idea what to do now. The surgeon is still almost certain that it is Crohns, and if not then it is something very similar, but he is now waiting for another test... Calprotectin levels I think it's called. Here in NZ that result could be another 3-4 weeks away. If that test comes back clear they I will be going down to Wellington on the urgent list for a capsule endoscopy which should happen within a week of getting the calprotectin levels back.

    I know what I want to say but not the words to say it, so if any part of the rest of my post makes no sense then I'm sorry! It's been a long day.
    Basically, just because the results of the biopsies said no Crohns, doesn't mean it isn't there. The scope can only reach as far as the ileum part of the small intestine, but Crohns can effect anywhere from start to finish of the small intestine, the ileum is just the most common part effected.
    Cal Protectin is a calcium and zinc binding protein that reacts to inflammation in the bowel. The more inflammation you have in the bowel, the higher the calprotectin levels are. (I spend a lot of time questioning the surgeon and googling so I'm learning a lot).

    Now I'm right back at square one and have no idea what to do next. I've had a medication change yet again, so now I'm losing the plot with what to take and when to take it and I need to set reminders on my phone for each one.
    The past 3 days have been bad with the internal tug-o-war thing going on.
    I'm tired, I'm sore, I'm lonely, and I'm confused and scared. I just want this to stop one way or another, and every medical professional I see asks if I've been thinking about suicide. Well heck, I've thought about it off and on for years now, I've got several methods planned but here's the catch. I can't put them in to action. One, because I couldn't do that to my friends and family, I would rather suffer through this than look down upon them and see them hurting. Two, I'm scared that if I did attempt something that I would screw it up and become physically or mentally disabled for the rest of my life, making the situation worse. Three, what would happen to my horses if I did? Who would look after them, what sort of homes would they end up in? Would they miss me? They come galloping to the gate every time I appear or holler a name out, they don't bat an eyelid for anybody else. But the thought is always on my mind, I'm not going to deny that. I often have nightmares about going through with it.

    And this post was meant to be a short one, when I start writing it just keeps on coming and I have to go back and re-read what I wrote because subconsciously I put everything in there.
         
        10-03-2013, 03:46 AM
      #58
    Showing
    Quote:
    Originally Posted by HollyBubbles    
    The past 3 days have been bad with the internal tug-o-war thing going on.
    I'm tired, I'm sore, I'm lonely, and I'm confused and scared. I just want this to stop one way or another, and every medical professional I see asks if I've been thinking about suicide. Well heck, I've thought about it off and on for years now, I've got several methods planned but here's the catch. I can't put them in to action. One, because I couldn't do that to my friends and family, I would rather suffer through this than look down upon them and see them hurting. Two, I'm scared that if I did attempt something that I would screw it up and become physically or mentally disabled for the rest of my life, making the situation worse. Three, what would happen to my horses if I did? Who would look after them, what sort of homes would they end up in? Would they miss me? They come galloping to the gate every time I appear or holler a name out, they don't bat an eyelid for anybody else. But the thought is always on my mind, I'm not going to deny that. I often have nightmares about going through with it.
    This shows how wonderful of a person you are to think through this logically and to put yourself in the place of your loved ones, blood and hooved

    And your post was clear about the Cal Protectin, so cool what you're learning (despite the circumstances...)

    Hugs hugs hugs
         
        10-03-2013, 12:43 PM
      #59
    Weanling
    Big hugs, girlie! I know it seems hopeless at times, and I have felt much the same recently, as you know. Venting is good, and you are making sense! It sounds like you have a good doctor who will be your advocate. That alone is a wonderful thing, but one that you absolutely should not feel guilty for. Hang in there. <3
         
        10-22-2013, 01:34 AM
      #60
    Started
    Well, today I had my appointment with the surgeon, while I have managed to contract the flu of all times -_-
    He has now officially diagnosed me with Crohns Disease, and I have been started on Pentasa, a derivative of aspirin I think? From what I was told.
    Tomorrow I will also be started on Prednisone, 40mg for one week, 30mg for the next week, then 20mg, 10mg and finally 5mg. So that's a course of 5 weeks where I will probably start to look like a chipmunk due to water retention in the face.
    I don't know what to think or do for now, on one hand its a relief to have a diagnosis and to know that a treatment and management plan has been started, but on the other hand I'm not impressed with the diagnosis because it doesn't just go away like the flu does, it's there for life and there's nothing I can do to rid myself of it fully
         

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