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Wolf52
#41 Posted : Sunday, May 02, 2010 7:03:56 PM Quote
Rank: Advanced Member


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Joined: 12/8/2009
Posts: 124
Location: Wolverhampton
Dear Jenni, so sorry to hear your news. Wholeheartedly agree with others for you to obtain a second opinion. Hope you have heard back from your rheumy nurse.

Take care,

Nina x
jenni_b
#42 Posted : Sunday, May 02, 2010 7:16:11 PM Quote
Rank: Advanced Member


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Joined: 12/3/2009
Posts: 2,237
Location: nr Southampton
hi all,

she was a general physio. i think she thought she could help when i said its not to do with the RA it is a mechanical problem in the lower back. I hadnt realised it is a mechanical problem yes, but caused by the effects of the stupid RA! She realised I am too complex for her then I guess

never mind.

I am going to see a childminder on tues with richard for Bernice. She seems lovely and has some children of her own, one of whom is a wheelchair user so her house is access friendly. Plus she should understand a life dealing with disability more. she is going to have bernice from 2-6 on mon, weds, thurs and on a fri my PA is going to come for longer. that will help I think!

the thing that made me smile most when I wobbled over with the physio and cried at the gasp and the crappy stability of everything she suggested counseling or happy pills! lol. Not that Im saying they dont help a lot of people, because they do but I am not depressed (one of the scores I have been VERY lucky in) and just because you cry at someone telling you are unstable and cannot walk safely doesnt mean you are depressed. what do they expect you to do say "yippee" and wave your sticks in the air? Silly woman!

I have had a letter from my rheummy asking if I want to see him to talk through "options" to come and see him after clinic. He doesnt want to involve an immune specialist as he thinks too many cooks spoil the broth, but what he doesnt know is that I am under endocrinology, neurology, dermatology, rheumatology and really I aught to see a tummy specialist too- and none of them speak to eachother!!!

anyway- I guess I will be pointing that out.

I have decided not to discount the hydro- I think the heat of the situation can cloud things rather and I will try and ring the hydro dept and talk about someone there helping me change etc.

Thanks for all your support. I really am feeling very alone right now as Im just not able to go out.

Jenni xx


how to be a velvet bulldoser
Damned76
#43 Posted : Monday, May 03, 2010 10:11:38 AM Quote
Rank: Advanced Member


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Joined: 12/3/2009
Posts: 1,081
Hi I hope it goes well with the childminder, it sounds ideal. I felt terrible when I sent Jim to the childminder at first, so I could go back to work but it turned out to be amzing for him. It broadened his social horizons so much, interacting with new adults and children. By the time he started school he was so bright and confident he did really well. Plus, this might seem a bit cold, when you are paying a childminder as an employer, you don't suffer all the guilt and anxiety you have in relying on family. The boundaries are a lot clearer. Does that sound awful? I don't mean my family did ever make me feel guilty for helping out but I felt bad some days, wondering if they were too busy, watching the clock all the time to make sure they didn't feel I was taking advantage of them etc. I'm sure Bernice will love to have some playmates.

As for the rheumatologists offer, I hope you take this up. Even though it would appear that he is not fully au fait with your situation, it could be a good starting point if he does listen to you and maybe he could put the wheels in motion to get you some more co-ordinated care.

Take care.

Julie x
Julia17
#44 Posted : Monday, May 03, 2010 8:21:51 PM Quote
Rank: Advanced Member


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Joined: 2/18/2010
Posts: 1,098
Location: farningham kent
Hi Jenni

I hope all goes well with your child-minder is sounds ideal for you all. You are a funny and remarkable woman, and your posts so often make me laugh I m sure you were destined to be a comedy script writer you make me chuckle so much. I m really pleased all is going well with your boy, sounds like he s on the right track - well done its not easy.

I am fortunate at the moment as I gather from what I have read etc. I have mod - severe ( as they say ) not having much family for support and only small circle of friends now ( don t worry you don t need to get the violin out ) I have bouts of feeling low and depressed mainly because I have felt so unwell in myself let alone the pain and can t get out of the house much and get my life back. Due to all this I wondered about taking anti - dep. but like you, felt the same I get more annoyed and angry with it all, not depression. What you have just said just made it clear to me now.

I hope all goes well with the rheumy meet up and progress can be made, I m pleased you will try and go to the hydro, as you said in an earlier post, it does take alot of effort for you which is understandable, but I think it does alot of good. I know every morning I soak my arms and hands in hot water as soon as I get out of bed and it does seem to help.

Thinking of Julia x
lizziemouse
#45 Posted : Monday, May 03, 2010 11:00:50 PM Quote
Rank: Advanced Member


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Joined: 12/3/2009
Posts: 872
Jenni, when will you be seeing the rheumy?
Just thinking is this possibly the chance to kick start the multi disciplinary get togethers that are needed?
Lots of love and Huggles (...it's my new word, thank you Paula!)
~ Liz xxxxx
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