Bad day - just wanted a moan on my daughters behalf!
worriedmum
Member Posts: 79
Sorry, I don't normally resort to using this forum for a good old rant but have had a rubbish day and just wanted to sound off to someone who understands. I'll apologise now as I know many of you are in a much worse situation but after the last few weeks, I have just about reached saturation point on Freya's behalf.
Brief history: 4 and a half year old, daignosed JIA age 2.
7 joints injected since then, last one middle June, ten days later, diagnosed with bilateral Uveitis , treated with Prednislone drops, since identified another joint which needs injected, started MTX 4 weeks ago, had physio clinic and Uveitis clinic today, still active in both eyes, so they want her to increase MTX dose as soon as bloods come back and go back in a month, and continue drops and then to top it off, her joint injection planned for tomorrow has just been cancelled cause there are no beds available.! So , the ongoing stress of the last few weeks and all the arrrangements and psychological preperation for tomorrow - you know how stressful that is - and now back on the waiting list with loads of appointmetns due the same week as she starts school - oh and I'm six months pregnant, knackered and really need a drink but can't have one!!!
Freya copes brilliantly, puts me to shame actually - feel better now. Thanks for listening Hope you and all your small people are doing well today. If not, I hope I can help by being a supportive contact for you anytime you need it.
Sam. xxx
Brief history: 4 and a half year old, daignosed JIA age 2.
7 joints injected since then, last one middle June, ten days later, diagnosed with bilateral Uveitis , treated with Prednislone drops, since identified another joint which needs injected, started MTX 4 weeks ago, had physio clinic and Uveitis clinic today, still active in both eyes, so they want her to increase MTX dose as soon as bloods come back and go back in a month, and continue drops and then to top it off, her joint injection planned for tomorrow has just been cancelled cause there are no beds available.! So , the ongoing stress of the last few weeks and all the arrrangements and psychological preperation for tomorrow - you know how stressful that is - and now back on the waiting list with loads of appointmetns due the same week as she starts school - oh and I'm six months pregnant, knackered and really need a drink but can't have one!!!
Freya copes brilliantly, puts me to shame actually - feel better now. Thanks for listening Hope you and all your small people are doing well today. If not, I hope I can help by being a supportive contact for you anytime you need it.
Sam. xxx
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Comments
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Hi Sam
If there is anything worses than being in pain youself - it's watching your child in pain and being unable to do anything to ease it. you have every right to moan and Freya sounds like she has the patience of an angel.
Hope things work out for you both
Cath0 -
Hi Sam, that is very annoying and frustrating - all the plans and systems in place and ready to go ... and then for the jabs to be postponed.
Is it worth ringing the hospital and seeing if there is another date ... explaining about Freya starting school etc
She sounds one amazing little girl.
Hope you get some chill time this evening.
SpeedyI have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.0 -
Hi Sam
That is indeed a dreadful day. There's nothing more frustrating than getting yourself prepared for your child's appointment and then have it cancelled.
I hope things are going better today. And this is most definitely teh place to come and vent.
Fingers crossed that Freya is all sorted out in time for school.
Best wishes,
Andy0 -
Just wanted to send my love too you all.
I understand exactly how you feel, it is so stressful and emotionally draining, but like you said yourself our children put us to shame some times , kaitlin is absoulutly amazing at all the hospital appiontments now granted when we first started she wouldn't let anyone touch her but now she straight in and on slit lamp machine no questions asked, unbeleivable how much they tolerate.
it is hard because the are our children and there care is somewhat taken out of hands, but they are been monitored by the best and we have to put all our trust in them.
Take Care of your self
xxxxxxxx0 -
The affected child is often more stoical than the parent: the child is in the middle of it, he or she may not remember life being any different, and they don't understand necessarily all the implications and vagaries of their treatment. The parent is on the outside, continually seeing their child in pain and struggling, knowing that they have to give foul meds and allow further foul meds to be administered. It's far worse to be watching than to have it. It amazes me how well you all cope - but that is what parents do, and you all do it remarkably well. DDHave you got the despatches? No, I always walk like this. Eddie Braben0
