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It never ceases to amaze me...

mariajtmariajt Member Posts: 4
edited 7. Apr 2010, 16:08 in Young people's community
...just how many brave, inspirational people i have come accross since being diagnosed with inflammatory arthritis 2 months ago. :)

Hi all, my mum found this forum; i can honestly say it's so reassuring to finally hear from other young sufferers. Been reading a few posts under this 'young person's forum' and just wanted to introduce myself today :)

The start of this year started with me having really uncharacteristically sharp pains in my joints, particularly right hip/thigh. I felt depressed and ill quite a bit and couldn't for the life of me work out why, i've always been so active and healthy! And could safely say it's normally a rarety if i'm ever really poorly. For ages we assumed i must've just pulled my thigh muscles riding all summer and running about with the dogs, but strained muscle pain goes away and my pain just got worse and worse untl it was an effort for me to get out of bed (after just having turned 18 the month before in october it was a nasty shock ).

So it's been a bit of a rollercoaster end to the year and especially the last couple of months things have happened mind-numbingly quick. I was diagnosed in hospital (after being admitted following the results of many emergency tests, MRI scans etc) and had keyhole surgery in the form of steroid injected into my hip to try and bring down the inflammation, but this was before they found it had also spread to my knee. Since then i've gone through morphene poisoning, been ill for absolutely ages off numerous painkillers that haven't agreed with me, had nerve blocks into my hip because the pain is still as bad as ever, tried hydrotherapy, physiotherapy...the list is endless. Feels like so much for saying I was only diagnosed in November, at the mo i'm just at the point of waiting for the MTX to work..7th week now and I really hate it, not seen any benefits yet.

What can i say, it's been a great shock to all of us but i couldn't be getting through it all without the support of such brilliant family and friends, and it's great to find forums such as this :)
It really is only at times like these where you have no choice but to take each day as it comes. And i didn't know the meaning of any of these sayings before all this, so for the fact i take nothing for granted anymore i am grateful. And although i don't feel like me at all these days, just like the shell of what used to be me but pumped full of a nauseating amount of drugs, it's made me stronger in ways i didn't even know it could.
Cheesey, yes; exaggeration, no :lol: I always remember admiring my nonna's bravery when she said that treatment often felt far worse than the illness itself and i think she's definitely my inspiration.
It's also nice to talk to the people who've been through what i'm going through and that it gets easier and that i'm in the hardest few months now. Concerning though that i've felt nothing but increased pain since first having the steroid injection though..most people i've come across with RA swear by them :?

Not been back to school since, if it's not major flare ups it's the hard choice of having to decide between quality of life with no painkillers but with pain; or painful quality of life sans painkillers :?
My school have offered very little support – i'm meant to be in my final year of a levels but am definitely gonna have to retake the year now. Hopefully will be able to take at least my English this year because I can do a lot of the reading at home but my parents have organised a meeting with my head of year this thursday...they really do need a reality check on their ignorance. Not fair how i've just been left to fall by the wayside through my suffering :( I have no idea what will happen now in terms of exams n stuff..i wanted to go to uni this year.

My dogs have kept me strong :)
I own 2 beautiful Tollers (Nova Scotia Duck Tolling Retrievers), mother and son :) , and a cheeky little Tibetan Spaniel and post on the NSDTR Club of GB's forum, coming across a few other sufferers and being able to share in just what an amazing effect dogs have in rehabilitation. The hardest thing has been giving up being able to do things with my dogs. My goal is to be able to walk them round the park again; a long shot from where I was this time last year – competing at Crufts with my Tilly. I qualified her back in May for this year as well in Heelwork to Music..don't think so though somehow, can't dance on my own let alone with a mad little red dog weaving in and out my legs :lol: :roll: :( :?
So yes, for the first time in aaaages it seems i took my dogs out into the garden Winter?! I swear when i last looked the leaves were only just turning gold. I asked my friend, who'd come to visit me, just to set a couple of neglected agility jumps up in the middle of the lawn for the dogs to enjoy. I think Tilly's face actually split in half with the grin :D It was the best feeling ever for me to see them enjoying themselves - it breaks my heart, they're so patient and gentle with me now but i know they're dying to go mad and and train again. My friend didn't even need to say anything, he put the jumps up and both tollers just sailed over screaming their heads off. My mum was holding me for support (i'll be damned if i'm gonna use that bloody wheelchair!) and she just suggested i try something.
So there i was, propped up inbetween these jumps on my crutches, squeaky rugby ball in hand, tears streaming down my face, as i literally just pointed and Tilly & Basil flew over for as long as i had the energy to tell them to. They completely knew that was all i'm able to do right now and they just appreciated every minute of it :') It lifted me so so much and i know for a fact gave me more hope than anything i've been told over the last few weeks. I'd love to make my Till a pat dog so i can have her with me next time i have to go into hospital. If she can make other people smile half as much as she made me then i'll have achieved something more than I thought I could.

Sorry I think i've ranted a bit :oops: Just wanted to introduce myself and where i'm at at the moment in this scary, quite life-changing illness.
Love to hear from anyone and everyone with your experiences, especially if your dogs have done anything for you :)

Comments

  • stephibabe2stephibabe2 Member Posts: 60
    edited 30. Nov -1, 00:00
    Heya, welcome to the forum :D Im Steph [17]

    I found this forum while browsing the web and felt exactly the same as you when I started reading everyones posts. It was so nice just to hear other peoples thoughts and to know your not alone. Im sure you will find lots of reasurence here and meet some nice people as I have done.
    First I must say that I was amazed by your strength and detrimination, I was dignosed at the age of 5 and have only built up that same amount of determination in the last few years. So let me just say you should be so proud of yourself, and although at times it may be hard, keep that same level of strength and detrmination up. You have no idea how much of it you will need.
    I am at a similar point as you as I am having a flare up which I have not had for a few years now. Which is similar to starting from the beggining again :roll:
    I like you am in my second year of college and was hoping to go to Uni in september, unfortunatly I have had to be ralistic and put that plan on hold. But if theres one thing I've learnt is that your health is more important and as my mum said 'at your age, although it may seem a long time, in reality a year is a very short time'. And it took me a while to admit but she is right. lol Its unfortunate that your school haven't been very supportive, where as mine have been. They may become more understanding over time, especally if you give them more info on it. I think I may also have to take my year again, so it seems were in the same boat haha. :wink:
    It seems like you have been through alot in the past two months but as people have seem to have told you it does get easier. Once all your medication is balanced and you find other things that help, it will become easier to manage. But you already talk lots of sense, especially about the painkillers. Personally I feel that its more important to have a quailty life with no pain, but thats a personal choice.
    Finally I wanted to finish talking about dogs :D
    I loved hearing about your two little dogs and all you have done with them. I enjoy watching crufts every year and may hopfully be going next year as my mum has promised to get tickets. :lol: I myself have a 3 years old cavieler king charles spainiel, his name is Alfie and is absoloutly gorgeous. (but Im very biased lol) This is the first flare up I have been through when I have had Alfie and I cannot imagine being without him. When I came out of hospital I was desprete to see him and to just know he was so happy for me to be home and this made me happy. He is so caring to, when I am feeling unwell he will not leave my side or if I cant have him lying on me he will lie by my feet. Its amazing how he can sense when your unwell, I just love him to peices. And his cheekyness makes me laugh.
    I know Tilly & Basil understand why you can't train with them and that you will do it when you can. And I also know that you will be able to do it again, set it as a like a target to reach, even if you start with only a small amount. Its important to carry on the things you enjoy. I think looking into Tilly being a PAT dog is a great idea, Alfie does something similar to this already but with disabled childre, which he loves.

    Well I enjoyed reading your rant :D (even though it wasn't) lol I'm sure you will get lots more replies but if there are any question you want answering please don't hesitate to ask them. I will try my best at answering them lol. However if you do wish to chat further I have both Facebook and msn, which I can send you if you want but don't feel obliged to say yes.
    Keep smiling and staying strong :wink:

    My best wishes go to you, Steph x x

    (I must appoligise for my spelling :oops: , It's not at its best late at night) lol
  • mariajtmariajt Member Posts: 4
    edited 30. Nov -1, 00:00
    Steph :) Thank you so much for such a goorgeous reply :) Fills me with confidence hearing someone my own age handling it as bravely as you say i am. I sound like i talk the talk but let me assure you, i often fail bitterly to walk the walk :roll:
    You're right, at the moment i thought i'd called on my strength all i had to but after such a good day (met with my head of year - he was very understanding and lots of measures are being taken to allow for me :) ), it feels like i always end up taking one step forward and 3 back. Had a call from the rheumatology department when we got back from my school; my bloods show the Mtx is damaging my liver significantly and i have to come off it altogether immediately :shock: :| Going back in on monday for more tests etc...square 1 basically. Just as i thought i saw a chink of light.
    I'm kinda glad..i've not felt any benefit from being on it, or even the massive concoction of pain medication, so if it means trying something else i can eventually feel the benefit of then so be it :? Just been getting increasingly ill ever since my diagnosis and, lo, since starting the treatment (same with the morphene poisoning, steroid, nerve block...). It's scary though...means i'm not on any disease-modifying drugs atm..so it's uncontrolled until they make the next move :? :(
    So so sorry to hear about your flare up at the moment, this doesn't often happen to you? What's your treatment? Do you take any drugs if diagnosed at such a young age? For me, I can't imagine having to grow up with something like this; you're MY epitome of strong ;)

    We do sound like we're in the same boat m'luv :) I would love to add you on facebook (don't really use msn), love to talk to you loads more, what's your surname?
    Alfie sounds like the perfect pickmeup for those horrible dark days :D How absolutely lovely that he makes disabled children smile. I watched that program on bbc2 'the secret life of dogs' and it is scientifically proven dogs release happy endorphins in us when we're with them and help us relax. Also, amazing things like you're less likely to have a heart attack if you own a dog and if you do, you're more likely to recover – i'm in no doubt my dogs have kept me positive and helped my mobility improve quicker than it ever would without them :) Alfie sounds gorgeous, the bit that got me in your description was when you said when you're too sensitive for him to lay on your lap he'll understand and lay by your feet instead :') There was me sat goin – 'Ooh mine too!' How amazing are these dogs really :) But equally, alfie's owner sounds pretty impressive too :P
    Oh god don't worry about it, if the only person I talk to on here is you then that's fine by me. Far reassuring to have just one like-minded soul than none at all.

    Loads of love xox

    (My surname's (Edited by moderator - see terms and conditions) btw – add me if I don't add you first!)
  • stephibabe2stephibabe2 Member Posts: 60
    edited 30. Nov -1, 00:00
    Heya :)

    Your very welcome, plus you had me from the moment you mentioned dogs :lol:
    Im so glad to hear about your good day, it has always been important for me that when at school and now college that they be understanding. I have been especially luckily as my tutor used to be a nurse so she is extra understanding, which I am so grateful to her.

    Yes Methotrexate is a tricky one, it works differently for different people. What mg was you on ?
    Well if it wasn’t working then at least you can now focus on one that will. They will probly have a few options for you when you go on Monday :)
    I haven't had a 'flare up' for roughly 5 years which is very lucky, when I was younger they would happen every couple of years. This one is a particularly bad one :roll: However during the 5 years I still had the arthritis in lots of my joints but I also suffered with other things due to side effects of medication (but no ones really sure lol) At the moment I’m taking 25mg of Mtx, cyclosporine, deflazicort (steroids), paracetmol, ibrofen, tramadol < all painkillers, omeprazole and folic acid. Think thats about it haha I don’t like taking that amount of painkillers but it can’t be helped at the moment. They are also looking into a new medication which will hopefully get this flare up under control. Its a family joke that I rattle like a smarties tube lol Obviously it has changed since I was 5 though. Thank you :D, I should be strong by this point haha
    He is very much so :D I think I watched a programme similar to that one. They are pretty amazing, and it’s funny I can’t remember what life was like without him. I’m very much looking forward to being able to take him for walks again. & also I’m very much looking forward to later in the year as hopefully we will be getting a puppy :D:D:D
    Of course I would love to chat more, its been nice to have a long chat with someone. You should find me by putting in Stephanie (Edited by moderator - see terms and conditions), although if it comes up with lots put in my college (Edited by Moderator - see terms and conditions).

    Look forward to speaking to you soon, keep smiling. Steph xoxo
  • mariajtmariajt Member Posts: 4
    edited 30. Nov -1, 00:00
    Steph, i've pm'd you xoxox
  • cthornleycthornley Member Posts: 627
    edited 30. Nov -1, 00:00
    was just reading your posts and although ancient now (31) I remember being where you are , I was diagnosed with when I was 19....it was a bit of a bummer as i was in my 1st year of uni, 300 miles from home and **** scared, unable to walk/dress/etc and in hideous pain
    I struggled on but part way into 2nd year I took the decision to take some time out and reassess..then restarted the following sept.
    Uni is very doable - even very difficult courses ( i did architecture , took 8 yrs, 3 degrees and endless all nighters, even more difficult when suffering from severe fatigue), you just need to get the best support available contact the student disability service (most unis have them now), get a student disability assessment/ grant and you can get assistance from special equipment, people to get books from the library for you, extra time.... i even got somebody to help make my models although i nearly killed her!!
    Make sure its something you really want to do and you'll muddle through....
    good luck to you both _ I hope you get to wherever you want to be
    arthritis shouldn't stop you from doing things you really want to do...you just may have to think about the journey a little bit more than most
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