Waiting, always waiting...

Discussion in 'Rants, Musings and Ideas' started by ThePhantomLady, Jan 26, 2016.

  1. ThePhantomLady

    ThePhantomLady Safety and Support SF Supporter

    I feel like I, and my entire life is on hold right now...

    I went to my doctor Monday and while this is good news... it just adds to all the things I am just going to sit here and wait for...
    I have scoliosis and the curvature of my spine is pressing on at least one disc, which causes me horrible pain.
    I have always had a sore back and knew being too active aggravated it. When I was little a doctor said my spine was twisting, and if it got worse I was supposed to come back as it could be scoliosis and it might need treatment...
    I never got back to the doctor... I guess my mum wasn't interested in a doctor seeing all my bruises and marks... from *cough cough* being 'clumsy'. And then I didn't want to go either as I became a teenager and very self conscious after being raped etc... I didn't like the thought of a man seeing me naked and touching me...

    When I was 23, in 2013 my back suddenly got very bad. I could barely walk, some mornings if I had slept on my back I could wake up with paralyzed legs that lasted up to a few hours... that still happens, and the last 6 months there's been weeks where my pinky toes go numb which makes it even harder for me to keep my balance.

    Anyway, back to 2013... I didn't want to go to the doctor again... mostly because I was scared they would give me pain relief. In my teenage years I was addicted to pain killers and got out of it alone without telling anyone... It was so hard and I never wanted to do that again... I tried to survive the pain with meditation and music (apparently Joan Baez and Bob Dylan helps) and I got obsessed with BBC's Sherlock... trying to forget about the pain.

    In early 2014 I finally cracked, I realized the pain was only getting worse... I was prescribed medication and had an x-ray done of my back... Turns out it was Scoliosis, and that I'm also double jointed. And because it wasn't treated when I was a teenager the curve will only get worse. My doctor was an old 'pig' of a man who didn't really bother with his patient. He never listened to me and didn't bother talking to me about options... he just kept adding to my doses of pain relief...

    Monday I saw my new doctor...
    (when I was given the option to change doctors last year I quickly chose that option. And I'm glad I did!)
    I actually went to hear if there was a chance to get higher benefits as it's difficult to find and keep a job I can manage with my pain... that wasn't possible... but suddenly the doctor got a very bright idea! She's signing me up for a free 'rehabilitation' program. They offer physiotherapy, dietary advice, and will even help you live with chronic pain.

    I'm really happy something is finally happening. But... it's just such a reminder of little has been done up to now.

    And it's another thing added to the list of stuff I'm waiting for... but I have absolutely no idea when will happen

    - I am waiting to be called in for therapy I severely need (I've had several suicide attempts and self harming episodes through those 8 months)
    - I am waiting to be called in to get checked for the cancerous gene that runs in my family, and my mum has...
    - I am waiting on a lady from the jobcenter to get back to me with a date for a meeting with the unpaid placement she found me...
    - And now I'm waiting for this too...

    It's driving me nuts not knowing. I can't plan ANYTHING. I can't really afford to go anywhere because I'm dirt poor... but I can't even invite my friends over in a couple of weeks because I have no idea if I get called in for one of those things.

    And, also about the jobcenter thing... the more time that passes where she isn't calling I get nervous that it isn't happening...


    This is messing up my OCD. I need to know stuff!!

    And my Birthday is coming up too... but I can't even get it into my head to plan anything for that.
     
  2. Arcturus

    Arcturus Active Member

    That's awful, PhantomLady...

    I'm really sorry you have to go through all these horrors... and moreover, it sounds like there's a lot of uncertainty about everything that might help you. Waiting around and not being able to do much when there's something important that needs to be resolved is seriously one of the worst feelings in the world... I hope everything turns out okay for you. At least you have a doctor who's more proactive now! I hope that makes the waiting a little bit easier, at least.

    By the way, Scoliosis is sideways curving of the spine? It sounds pretty severe... hopefully the job center will be able to find something that doesn't require moving around a lot. But honestly, I'm pretty amazed that you have the willpower to do any work at all with the hand you were dealt. I can't imagine what it would be like to live with all this; I think you're a really strong person for even managing at all.
     
  3. ThePhantomLady

    ThePhantomLady Safety and Support SF Supporter

    Thank you... I'm happy about my new doctor, well doctors. I've seen 3 different ones and they have all been lovely. They actually even look you in the eye and listen to what you say.
    My old one barely took a minute, mumbled while you tried to explain something... and he was rather fond of checking my double jointedness... I have checked though, and he did do the test right by holding my hips and have me bend down to touch my toes... but yeah. It wasn't my favourite experience... and that's ignoring the fact that it f*cked up my back for the rest of that day too...

    Scoliosis, in my case is both a sideways curve and a horizontal twist. The curve will grow gradually for the rest of my life as far as I'm aware... If it had been treated with back-braces or corset when I was around 13 it could have been slowed down and corrected.

    I'm a bit of a overly 'proud' person. I normally don't let people see me hurting... I have a bad habit of giggling if I'm exposed to pain in public...
    My last job was at a hospital, children's obesity clinic. I was a secretary and research assistant too... I tried to hide my condition from the doctors *does a facepalm* but they were quite lovely. I got to take work home when it was bad, and possible, they even made sure to give me diverse tasks through the day... some desk work, some paper work... some assembly work, some work with the little patients etc...
    Even then I couldn't do a full work week...

    But the thing is, I need a job to pay my bills... It's very hard to get disability benefits... I'd prefer that though... but it's such a long process and a lot of people have told me I'm not sick enough. My best friend is schizophrenic and has been told she's never going to be allowed to have a job, not even she has luck getting the disability...
     
  4. Petal

    Petal SF dreamer Staff Alumni SF Supporter

    You have my sympathy. My mom has had scoliosis since she was a teenager, it getting so bad to the point she couldn't work for quite some time when I was younger but slowly she got some relief through therapies and medication. She works every day now, thank god she's able to. I have seen how it makes my mum feel and see all the things she cannot do, I saw an e-ray of her back, it's completely curved.
    Anyway back to you lol...I am glad they are going to help you with living with chronic pain, I imagine that would be a huge help to you right now. I hope all the waiting for appointments will pay off for you in the end, think positively, they will!! As for now, know you have us for support and that nice doctor who is helping you. If they could do anything else for you what would you choose? And how are you getting by financially now hun? I hope things aren't ''too'' bad.
     
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  5. ThePhantomLady

    ThePhantomLady Safety and Support SF Supporter

    Sorry to hear about your mom, Petal. But I'm happy to hear she's working now! That gives me some hope too!

    And financially I'm okay... I just got my benefits notice tonight, it seems my taxes have changed so somehow I am getting what I'm used to getting... whereas I thought I'd be getting less, when I'm barely scraping by already. So, that's good news