Daughters urology appointment sends my fibro through the roof

[Ozzygirl64]

I, like so many others, do my best to avoid things that make my fibro exacerbate. But how do we deal with the things we have no control of that make it worse. Today I am lost, the more angry I get, the worse I feel. As hard as I am trying to calm down I just cannot and I seem to be going around in circles, so I thought maybe some support here may help. I shall tell you why. My daughter has in all had 7 UTIs since 21st September. One so bad because her bladder has stopped working that it put her in hospital before Xmas and seeing herin resus and me being told I was worng her bladder was empty, only for them to do an ultrasound to shut me up and discover her bladder was so full it was at risk of bursting plus the urine was backing up into her kidney, not good. Her body had started to absord the toxins and we could not rouse her, rushed in on blues and twos, I think I have mentioned it before. Whilst in the hospital they cleared her out and with 24 hours she had yet another infection, so they cleared her out again. Since then she has had two more making her very ill over the holidays. Today she went to Urology for a follow up appointment, it should have been her first appointment but due to ending up in hospital they switched it to a follow up to save waiting months for another one. Her dad took her and mother in law gave them a lift. I was not well enough to go anywhere and can barely walk right now. She went in when called and sat down. Then the urologist looked up and said to her 'You have NOT had any infections, do you want to speak to a psychiatrist, you really need to talk to someone' and she sat there with her mouth open. She said to him that we had proof via the nurse, GP, ward doctors and the results of their own hospital labs. He was not having it and he has refused to put her on a profilactic antibiotics to prevent further infections. Anyway, she has to have a test done to check the pressure in the bladder and we feel he is only doing that to try and prove a point, which I know he is going to fail miserably. She was scared to tell me as she knew what it would do to me. I WILL be going to her follow up appointment even if I have to crawl and I WILL wipe the floor with him in such a way he won't know I have done it until I have left. The only good thing I learnt growing up was how to insult someones integrity without them even realising sometimes until hours later. So folks, you can see why my fibro is through the roof tonight. And another thing, we are obviously not alone as fibro sufferers having people think IT IS ALL IN OUR MINDS.....my daughter is going through it for an entirely different set of symptoms, I would consider not being able to pee very significant. Sorry I really needed to rant about that and now I am going to go and find some light hearted banter on here to cheer me up. Love you all and so sorry it was a bit of a mixed blog, but to be honest I did not know where else to turn except to all of you on here xxxxx

[irisjoy]

what an absolute disgrace , yet another arrogant tin god type consultant by the sounds of it.

Please don't feel guilty about not going with her tho i realise its not always easy

Could she ger referred to a different hospital ?

Have they given a date for the bladder test ?

take care of you both xx

[Ozzygirl64 in reply to irisjoy]

We have two hospitals and it is the same docotrs, just clinics on different days at either hospital. They rang this afternoon and offered her 16th but I was honest and said we already had family commitments. It is my mother in laws 65th borthday that day and none of us wnat to miss that. So when they get their new list next week they are going to ring us again, but it is always on a Wednesday, so we know that much. I am just so angry about it all but I knew I would get some much needed support on here. It is not often I feel this bad even with a flare, but this, I am lost for words. I cannot even think straight. I have god knows how many emails to answer and I have just remembered I need to send another one to daughters uncle. Just nipping to do that. Thanks for the support hun, really needed it. I said to hubby before, may this guy was an ATOS doctor before he worked for the NHS. I am just worried sick now incase the upset he has put her through triggers her seizures. God I hope not, not her age regression either as I have no idea how to catheterise her if she goes into age regression! xxxxx

[irisjoy]

Do you know i reckon it always seems worse when its our children its 100 times worse as we are programmed to make them feel better but we can't.

i think you are right to say no to the 16th as it is a special occassion.

what a mess this is tho and as you say it could trigger her siezures.

all i can say is just be her Mum and love her as you so very obviously do and i am sure you being there is helping her and understanding is the best she can waish for xx

[Ozzygirl64 in reply to irisjoy]

Yes it could trigger her seizures. The only way I can explain this is by giving you the link to a pot I made on Patient.co some years ago looking for help as when that happened we were literally left in the lurch with no help or advice. I hope it is okay to post this link and it is fine by me for anyone to go there as it explains why I am so worried about my daughter. I am extremely volatile when it comes to anyone upsetting her xxxxx

patient.co.uk/forums/discus...

[lynnecw]

Hi Ozzygirl,

just to say I am thinking of you and your daughter and wishing you both well.

I always say I am a tigress when it comes to anyone upsetting my kids, who luckily are all fit and healthy so I can only imagine how you feel. Stay strong and don't take any nonsense.

Take care

Love Lynne x

[Ozzygirl64 in reply to lynnecw]

Thanks Lynne, please see link in reply to irisjoy if you want to know why I am so protective over my daughter and thankyou xxxxx

[irisjoy]

hi Ozzy i have just read your other blog , how terrifying , sorry i haven't read all the replies but eyes doing thier own thing,

Have you thought of videoing her siezures so that the consultant can see for him/herself ?

How they can be so dismissive of both you and the paramedics ?

I do not consiger you over protective at all , you are just doing everything you can for your precious girl xx

[Ozzygirl64 in reply to irisjoy]

Well we were going to video them, but they said description was enough and she was discharged from neurology as 'nothing further they can do'. We have just been left to get on with it and that is what we do. We have learnt when it is time to call an ambulance and often in resus they are shocked that we know what to do and when to do it, and I often say, no thanks to some NHS staff, I tell them straight we had to teach ourselves. But hey ho, and people wonder why even with lung disease I am finding it difficult to quit completely. A few puffs every couple of days now, but better than smoking 20-30 a day. it is not so bad now though as we registered with the carers centre and they are going to help us expand our tiny bathroom, had a call from occup Therapist today to arraneg a visit, going to ring me in few days. Sounds so silly but we have to make room for her to collapse. With NEAD there are no warning signs so even if I sit outside the bathroom while she bathes she could hit the deck and I would not know until I heard the thud. And the downstairs loo carries the same dangerous problem, no space to collapse so they said they may be able to turn that into a wet room for us plus when she age regresses we cannot get her upstairs for me to wash her, and I cannot get he in the bath on my own even if I got her up there, but with a wet room down here with shower at least I could sit her down and turn the shower on. My mind is all over the place as infection triggers her NEAD and so does pain. And heres me complaining about fibro lol xxxxx

[Extremelygrumpy]

I am so sorry for you, and I appreciate you don't want to see any of the drs, but I would have taken the 16th.... In case the next appt they offer is even later, your daughter sounds like she needs to be seen ASAP

Hoping for the best

VG x

[Ozzygirl64 in reply to Extremelygrumpy]

Hey hun

I did suggest her taking it but she won't have it with it being her nans birthday. But the nurse said it will most likely be Wednesday the following week, so around 23rd all being well xxxxx(plus it looks like she is coming down with yet another infection, already on antibiotcs and they won't do it if there is infection) xxxxx

[Hidden]

I am so sorry to hear all this Ozzy, I can understand how you feel. I can only hope that this year things will be easier for you and for your daughter too. Please know that we understand and we do feel for you. We will try to help and support you as best we can along the way.

Bless you. (((hug))) xxx

Libs

[Ozzygirl64 in reply to Hidden]

well here is the only place I can really rant, it is either that or go and ring the urologists neck. The urologist she saw whilst in hosptial was totally different, far better bedside manner and said she needed to be sorted as soon as possible before any kidney damage takes place. And then she goes for an appointemnt, different guy and he turns out to be a nasty monster as she put it. I think she is right, he must have worked for ATOS prior to be telling her it was all in her mind. Peeves me as day after day she sits on the loo just trying to go herself to try not to catheterise. I think she spends most of her time running back and forth to the loo xxxxx(support from all most appreciated and yes I am still very very angry about it, just do not seem to be able to calm down)

[fibro]

thats such disgraceful treatment. i'm thinking of you both and hope you get some proper answers on her next appt xxx(((((hugs)))))

[Ozzygirl64 in reply to fibro]

I know it is hun and I am still so angry over it, but in the same respect I am doing myself no favours, viscious circle springs to mind. I mean she is 22 years old and she should not be going through this at her age. But hey ho, Lin lives to fight another day is the only thing that is keepong me going xxxxx

[fibro]

I think its just crazy and neither of you should have to put up with their 'attitude' If the boot were on the other foot so to speak they would be expecting you to jump through hoops for them! My brain is just feeling too weak to take any more and i just cant answer back when needed and i end up a heap of mush and get so upset with them. its not my falut but one thing they dont like is people crying!

i wonder if PALs can help you as that is really poor treatment. they are the patients advisory service/liaison service xxx

[Ozzygirl64 in reply to fibro]

yes I heard of them. I may look in to it if she gets the same treatment next time she goes in xxxxx