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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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HI all
Most of you know I have severe RA and it effects almost everything. Been through a long list of drug treatments and now with a lot of neurological issues as well as endocrine problems (drug induced), I have drawn a blank on the new drug treatment for the time being. Not heard anything for months. No follow up appointments to see the rheumatologist and a shambles of a long LONG awaited neurology appt in the Autumn but I have heard a rumour that the rheummy has asked a few questions about the Abatacept.
So basically no answers there.
The RA itself is bumbling along with a CRP of 44.
So! Me being me I am trying to think around things positively.
I am doing this course in becoming a social entrepreneur. It runs every Tuesday in term time. Basically I am setting up a charitable business providing wrap around support for local adoptive families with an emphasis on supporting the parents. I am SO DRIVEN and PASSIONATE about this. Ok the physical stuff is too much for me- but I can write and ring people. I am managing the Tuesday and spending most of Wednesday in bed or laying on the sofa. I do a couple of hours work and then that is it.
I then spend a few hours a day on the work side of things when I can manage the pain enough and not too sleepy from the pain killers.
The rest of the time I am being Mum and Wife. Sometimes I even get to be Jenni! Maybe one day I might even earn some money from the writing side- you never know.....! We are not on any means tested stuff anyway as Richard works.
There are a few things I want to tell you about that have made a huge difference over the years to me:
1) Almost 5 yrs ago we moved to a bigger house that was a ramshackle place and needed A LOT doing to it. It had potential though and was just about livable with new flooring and some clean paint.
2) We put in a drive and drop kerb.
3) We had a lower level area put in the kitchen so I can sit to do stuff in there.
4) We applied to the Union and got the funding for a stair lift.
5) We had a level access shower/ loo's put on plinths/ lever taps put in with Richards tax rebate.
6) My lovely parents bought me a whizzy outdoor powerchair and I have a second hand cheapy one for indoors.
7) We bought a cheap little transfer chair for the boot of my car
8) Replaced the nasty NHS Issue sticks with smart fischer ones from Switch Sticks.
9) Employed steadily more help to come in during the day to help me at home with my own care needs and with a growing baby/ family.
10) Committing to do the forum and keeping up with the lovely cyber friends who have stuck with me all these years!
There are some "exciting" developments for me this year that I am somehow embarrassed to say I cannot wait for.
1) A WAV is on order for me. A wheelchair accessible vehicle is just the key to freedom! I can go OUT on my OWN! WOW! (Obviously with some help with Bernie)
2) We are going to have a bedroom built downstairs with en suite (Knocking the old and leaking conservatory down).
3) We are going to have a ramp and side access put in and then the whole of the downstairs will be wheelchair friendly.
I CANNOT TELL YOU WHAT A WONDERFUL DIFFERENCE this will make to me (and my families) lives.
An independent mummy! WOW!
I am waffling rather so will sign off but thanks for reading and hope you can feel pleased for me? Just a little bit?how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Jenni
I have read your post with great interest. You are amazing and I wish you all the
best for 2011. Enjoy all the 'add ons' and I pray that the medication works for you.
You are an inspiration to me - you are so positive when it would or could be easy
for you to be all doom and gloom,
My hat is off to you.
Rose x
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Morning Jenni Firstly just have to say congratulations on 1004 posts !! Sorry missed the big one, but I know you won t mind. Thanks for sharing all your news with us all, I am so pleased to hear about all the alterations that will be getting underway at home it will be marvellous and give you so much more independence - just can t wait to get it started now. I hope you hear very soon about the new treatment - its no joke really being kept in limbo like this, hopefully the delay in moving forward is for the best. Best wishes with your course, you are a great inspiration to us all, and I m sure this will be a great success - I m sure you will have a book in print one day you have a natural gift for writing  Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Jenni,
I'm sure we are all much more than "a little bit" pleased for you! You have achieved a tremendous amount considering how severe your RA is.
I especially commend you for doing the course so that you can help other adoptive parents, you will be a fantastic support to them.
Hopefully the improvements you have made to the house will make life a bit easier for you and I hope you get the WAV and your downstairs bedroom very soon.
You are an inspiration to us all!
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Jenni, Thanks for sharing your thoughts and plans with us - good to have something to aim for in spite of this b****y awful disease!! Hope all your plans come to fruition for you, and wish you every success on your course. Kathleen x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Jenni Well done you. You should rightly be very proud of everything that you have achieved. Given your state of health you are one remarkable lady and an inspiration to others. Hope all your plans come together and you and your family are able to enjoy the benefit of the much needed adaptations. All the very best to you, Richard and family for the coming year, Lyn x P.S. When you're done ... can you sort out my house please?!
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Jenni,
really pleased to read such a positive post ... you are an inspiration in wanting to help others and soldiering on with what RA throws at you.
i hope all the improvements are of great benefit to you, and the WAV sounds like a new found freedom which must feel fantastic.
you are an inspiration on this Forum and i for one would like to thank you.
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 312
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Dear Jenni, You are such an inspirational lady. Best of luck with all your plans. May 2011 be a fabulous year for you and your family. Kind regards, Fiona 
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Rank: Advanced Member  Groups: Registered
Joined: 12/5/2009 Posts: 216 Location: Leicester, UK
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Such a great and positive post Jenni  It sounds as though you have got a bit of your umph back and listing positives and plans always helps. I know you must have both worked terribly to hard to get as far as you have and you all deserve your life to be a easy as possible and I hope it all gets done as soon as possible. You should be very proud of yourselves
Every happiness to you all.
Love Ann"I cannot do everything. I accept that. Not being able to do everything is no excuse for doing nothing." ~ Helen Keller
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Jenni
I always love reading your posts. No matter how bad I feel, I always feel better when I read what you have achieved and are achieving with the health problems that you have.
Good luck with all the renovations and stamp those red boots in the direction of your RA team and get them motivated.
Take care
Jackie
xx
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Rank: Advanced Member
Groups: Registered
Joined: 3/24/2010
Posts: 102
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cant agree with all the above posts more!
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Jenni, So glad you still have your positive nature, you certainly are an inspiration to others. Enjoy all your new plans for the future, you deserve them. Your new build will be a real help to you and your family, the en-suite will be lovely for you both, I love mine too. I am in the middle of re doing my conservatory at the moment, it's now a golden yellow colour and it MUST be finished painting tomorrow as my new carpet comes Monday and new sofa Tuesday. Every happiness to you and your family in 2011 enjoy all your new plans and I really hope your RA gives you peace and a pain free time for a long time. Take care and all the very best to you and yours. Lorna x
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Rank: Advanced Member
Groups: Registered
Joined: 5/19/2010
Posts: 384
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Hi Jenni,
Its great to hear that you are being so positive.
I also know from experience that people like you are needed out there to help adoptive families throught the early stages.
My sister and her husband adopted two children nearly 25 years ago and the early stages were very difficult for them, many tears and trantrums on both sides, with no support.
At present I know a lady and her husband who are going through the process of adopting a young lad with quite severe behavioural problems and at times she feels as if she is banging her head against a brick wall, she needs support but has to fight the system to obtain it.
As a foster carer I am lucky because all the support is available, and when you have good social workers on both sides its makes life so much easier.
It is a very rewarding and much needed thing that you are doing.
Anne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Jenni
If you could bottle what Monty refereed to as your 'umph' and put it on the market for sale you would be a multi millionaire!!!! No matter what life throws at you you are always so, so positive. You are certainly my 'cup is half full' person and not 'half empty'. Nothing seems to phase you, you always come out fighting with your Red Boots On.
I just want to wish you every success in your plans and hope that all of your adaptations happen as quickly as possible for you all.
You are one 'Amazing Lady'.
Love Paula x
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Rank: Advanced Member
Groups: Registered
Joined: 5/19/2010
Posts: 384
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Hi Jenni,
Have just read a book which really helped me care and understand the difficulties faced by children . A Practical Guide to Caring for Children and Teenagers with Attachment Difficulties by Chris Taylor.
As a carer it was brilliant and it may help some of your adoptive families.
Anne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/6/2009 Posts: 177
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Hi Jennie I am very very pleased for you, having a positive attitude and something to focus on is a wonderful thing. With this RA to cope with i think you are great, always here to answer our queries and worries when you have more of your own. I'm very glad that you are adding to your home and making it more accessible and comfortable for you and your family. Good luck with all of it. Love Shirley x
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