Soul destroying

radders
radders Member Posts: 42
edited 25. Nov 2010, 01:45 in My child has arthritis
Michelle, heart going out to you - can't be of any use, don't even know what to say...

It's so c**p sometimes.

Kath x

Comments

  • jordansmum
    jordansmum Member Posts: 257
    edited 30. Nov -1, 00:00
    michele, jordan and myself feel for you bouth so much sending big big hugs to you both
  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    Michelle - you both are having such a hard time. I bet you are exhausted - take lots of care and look after yourself. It is awful what our little girls are having to go through - and Kayleigh more than most. try and have a happy and relaxing weekend. We're on count down to mtx injection on "horrid friday". Catch up next week Lucy
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    Thank you everyone. We've had a busy afternoon, she decided she wanted to show her class the bear so popped in there for the last 10 mins of school. Then after that went into town to register the bear (give it a birth certificate lol) and she wanted a rain coat, hat, boots and trousers for it so it didn't get wet on hospital appointments. how cute even she realises the weather is horrible in this country haha

    She's asleep now was out like a light, tired but doesn't seem to be holding a grudge about today. Time will tell in 4 weeks time when she has more bloods taken. She's taken the plasters off by herself something she never does. I think she's trying to take control of certain situations lately as obviously for bloods and injections someone else has to do it.

    I still want to cry and need a hug as I keep getting flash backs of how she clung to me for dear life begging me not to let them take it from her hand, then screaming and kicking as it was being done then just broke down sobbing and again clung on for ages not wanting to let go or let me out of her sight. Wasn't till we were at the car that she finally became herself. Probably didn't help that I didn't bring her wheelchair. I felt she could do it today and I think if they had gotten it out first or even second time then it would have been ok but to try again and out of the hand (her least favourite place as arthritis is still really active there and in her wrists which they really hurt today had to tell the nurse off) was just to much for her.

    I hope everyone else is having a good day, we're off to Pennywell farm tomorrow then home and get ready for an evening wedding reception for one of Lee's cousins, my parents are babysitting so a night out yaya I so need it, then Sunday I'm off to the craft fair at westpoint with my mum for a girly day out again looking forward to that.

    Michelle xxx
  • worriedmum
    worriedmum Member Posts: 79
    edited 30. Nov -1, 00:00
    Michelle,
    I'm sorry you and Kayleigh are having such a rotten time. Sat here with tears in my eyes cause i can totally relate to what you are recalling in your flashbacks of the day. It makes you feel so cruel having to assist in these treatments when they look at you as if to say, you;re supposed to protect me from hurt. I know they realise it has to be done for their own good but it just makes you feel rubbish. All you can do is explain it to them, hope they understand and give them loads of love, cuddles and reasurrance after it's all over.
    Freya had a bit of a melt down today (MTX day) cause she didn't want to take her tablets. Usually not a problem, but the last couple of weeks has decided she didn't want to take them. I think she is just tired after school and maybe associates MTX with having to have blood tests and feeling a bit crap for a day or two. Will have to try to get to the bottom of it cause I think it will become an ongoing issue. Think she just feels like it's all a bit unfair and had enough lately. Will hopefully take her out somewhere nice tomorrow for a treat and c heer her up.
    Glad you have a fun weekend planned. Sounds like you both deserve it.
    Tell Kayleigh, Freya and her penguin, Pickle, are thinking of her and her new bear. And, I'm thinking of you.
    Sam. xxx
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    worriedmum wrote:
    Michelle,
    I'm sorry you and Kayleigh are having such a rotten time. Sat here with tears in my eyes cause i can totally relate to what you are recalling in your flashbacks of the day. It makes you feel so cruel having to assist in these treatments when they look at you as if to say, you;re supposed to protect me from hurt. I know they realise it has to be done for their own good but it just makes you feel rubbish. All you can do is explain it to them, hope they understand and give them loads of love, cuddles and reasurrance after it's all over.
    Freya had a bit of a melt down today (MTX day) cause she didn't want to take her tablets. Usually not a problem, but the last couple of weeks has decided she didn't want to take them. I think she is just tired after school and maybe associates MTX with having to have blood tests and feeling a bit crap for a day or two. Will have to try to get to the bottom of it cause I think it will become an ongoing issue. Think she just feels like it's all a bit unfair and had enough lately. Will hopefully take her out somewhere nice tomorrow for a treat and c heer her up.
    Glad you have a fun weekend planned. Sounds like you both deserve it.
    Tell Kayleigh, Freya and her penguin, Pickle, are thinking of her and her new bear. And, I'm thinking of you.
    Sam. xxx

    Thanks Sam, they were going to try Kayleigh with tablets but decided not to due to the stomach aches she gets just from taking ibuprofen so we have injection form and it's far less side effects but obviously have the injection to deal with. Would it help her having the tablet in the morning when she's fresh and awake ready for a new day? I can't remember how old she is but would a sticker chart help and after say 4 stickers she can get a magazine or small toy? Does she take anything to help with the side effects of the mtx, kayleigh has a folic acid 1 day before the injection and this has helped loads, although she is on omeprazole as well so not sure which one is actually doing the trick but not willing to change anything. I'm lucky in that Kayleigh will take any tablet/medicine that needs mixing with water etc. I do tend to chuck in a load of juice though with mixed tablets as the taste is foul. having never experienced oral mtx is it the taste that's perhaps getting to her? Perhaps a nice juice/choccy buttons to wash it down with might help. Sorry not much help and you've probably tried it all.

    Kayleigh has named her new bear Nikki so I will let her know that Freya and Pickle send their love. Many thanks and I hope you enjoy your day tomorrow. i'm off to bed now that my youngest daughter has done her nightly waking up, cry for a bit sleep again ritual lol

    Michelle xxx
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    She's been so happy today. Walked one of the farthest she has in so long, using her pace to go everywhere so she wasn't feeling rushed but helped that 23 month old wanted to walk too so snails pace it was lol. We went Pennywell Farm, only there for about 4 1/2 hours (due to needing to get home to get ready for the wedding reception tonight) but in my eyes walked far but ended up sitting in chair for last hour or so. She's def a lot happier today and not complaining at all of her arms and hand hurting even though there is clearly massive bruises on all 3.

    thank you eveyone for being there yesterday and listening to me blubber on. I'm feeling more refreshed after a good nights sleep but still having flashbacks to how she was, it wasn't the screams that got to me them I can handle it was the begging and pleading not to let them take it out the hand that's gotten to me :(

    Anyway a new day a better day and so much happier apart from being tired now lol So glad I put a sausage casserole in the slow cooker before we left this morning, smells lush can't wait to tuck in :)

    Michelle xxx
  • andylambs
    andylambs Member Posts: 71
    edited 30. Nov -1, 00:00
    Hi Michelle,

    Glad to hear that today was a good day. Yesterday sounded awful.

    I know exactly what you mean about the flashbacks. I still have waking nightmares about the time we tried a steroid injection in a finger joint without GA.

    It's awful to do these things to our children even when we know it's for the best.

    Cheers,
    Andy
  • speedalong
    speedalong Member Posts: 3,272
    edited 30. Nov -1, 00:00
    Hi Michelle, the whole bloods saga sounds horrid - you poor things. Sounds though like Kayleigh has bounced back with your support. She did well at the farm, better that she rode in her chair for the last part and that the day was enjoyable than that she struggled on foot and it spoiled the trip. I hope you had a good evening out too.

    Speedy

    PS S has real needle phobia after a innoculation that went wrong - he jumped as the needle went in and it snapped! They had pull it out and start again and his arm was all sore and swollen. When he then needed blood tests years later I requested "magic cream" (emla) and the GP gave us a prescription. S and I then applied a bit to our hands one evening to prove that it worked (he has autism - so needed practical proof) if you are worried how Kayleigh will cope with bloods next month - this might help.
  • worriedmum
    worriedmum Member Posts: 79
    edited 30. Nov -1, 00:00
    Good suggestion. We do this too. The nurse gives us a stock of Emla Cream and tegaderm to cover it, which we apply an hour os so before her appointment for blood tests every month and it helps enourmously!
    Hope all having a good day.
    X
  • lucysmum
    lucysmum Member Posts: 24
    edited 30. Nov -1, 00:00
    Oh hun I'm so sorry things were hard!! Lucy hates having her bloods done. She fights it, which makes it worse as then they end up pulling her wrists, which are sore!!! There have been times me my bubby and a nurse have had to retrain her her begging us not to let them hurt her!!!! It has been hard but she is starting to get used to it now, to adapt. She still fusses and fusses but will allow them to try once. we have an agreement if they can not get it after one try we come back another day. There have been times my local hossy have complained about this but I just told them tough I promised her once only and if you do your job right you will get it in one!!! This has given lucy some control which I think has helpped calm her.
    I hope things get better for you all soon.
    Big hugs x x x x x x
  • loopslike
    loopslike Member Posts: 7
    edited 30. Nov -1, 00:00
    Michelle,
    You have done a great job. These things are very hard and sometimes situation becomes more worse than normal times.As you done well, I congrats you.

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