Saturday, 26 June 2010

BIG, BIG UPDATE, MAY NEED A CUPPA FOR THIS ONE!!!

Hello all of my gorgeous blog family, i am so sorry it has been a while but i do have several good reasons, believe me!!! im afraid i bring no cards at this time as i have not been doing a lot of late (which i hope to rectify shortly!).
So here goes...............deep breath........and away we go..........................
I have not been able to write about this thus far, you have probably noticed i have not been my usual chirpy self of late (again hopefully soon to be rectified!) and i have had a lot of family (who read my blog) to inform first, that being my blood family, not my blog family! unfortunately me & the hubster have decided to seperate. No one else in the frame, no animosity, no nastiness, no rowing......we still remain very close, best friends infact, which was one of the reasons our marriage did not work. We love each other dearly, but just as friends, and we want to remain in each other's lives. It has been one of the hardest decisions in my life but i think it is best for both of us. We both have many plans for our future, seperately & together. Our friendship and our furbabies will keep us linked, and as my family is  also his, this will keep us united.

I have also been feeling really unwell for the last 3 weeks with my Rheumatoid as many of you know. As well as a lot of pain i have been feeling totally exhausted and not having much enthusiasm to be creative. I know a lot of stress has not helped and i need to start taking more control over my life. I went to see my Rheumatologist on Tuesday and to say he was a little shocked at how much i have deteriorated since he last saw me is an understatement. For the past few months i have only being seeing my Biologics nurse who has been supervising my drug trials but Dr.Sam now wants to see me on a very regular basis. The first thing he wants to do is get my pain under a lot more control. Over the next 4 months he wants to get me on daily steroids (i have been having injections every few weeks) and a slow release & long lasting pain killer, along with breakthrough meds if needed. Although i am worried about being on daily steroids, at this point i am willing to give anything a go. Mum was on them for 20 years and they did so much damage to her poor body but they helped to keep her alive. There are 2 more drug trials coming out in the next couple of months so Dr.Sam wants to see which one will be suitable. He also wants me to have another MRI scan as it has been a couple of years since i last had one. He is concerned about my spine so i guess he wants to see what kind of deterioration is going on there too. So all in all it was a good appointment. I have to wait for my GP to prescribe the new meds so guessing i will be starting these some time next week.

I have many plans for my future which i will be sharing with you all over the following weeks. My main goal at the moment is to get my RA under more control. Me & hubster need to get the finances sorted and all of the crap that goes with it (lots of form filling i guess!!!). I should be able to stay in the bungalow with the furbabies which i am relieved about as could not bear that upheaval.

Thankyou to all of my beautiful friends and thankyou for listening to me harp on. I find that my blog is the best therapy around. Your comments are absolutely precious to me & keep me going through the good & bad times. I promise i will be popping by everyone's blogs very soon as i know i have let that slip big time. I have always made a big effort to update my reading list daily and comment on all of your blogs but have not even been on my laptop as regular as normal.

I love you guys and will be back soon, just bear with me! xxxxxxxxxxxx

24 comments:

  1. What a difficult time. I hope things work out for you soon.

    Hugs
    Penni
    X

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  2. Thanks Penni, i know things will work out honey, it's just all the crap you have to deal with before you get there!!! trying to retain my sense of humour!!! love Clare xxx

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  3. Huge hugs hunny, from me, the Toadster and special ones from Vince xxxx Will mail you tomorrow xxx

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  4. Hi Clare hunny, i'm so sorry to read your post and i hope things get sorted out soon. I have Rheumatoid too very very painful sometimes what treatment are you looking at? i went on one as a trail 9 years ago now if i hadn't i would be in a wheelchair now and i've been on steroids for 14 years they keep a close check on my bones and a have to take calcium tablets everyday. I still get flare ups as the treatment isn't a cure and i do over do it sometimes but i cant be wrapped in cotton wool, which is what my hubby would do lol. take care hun luv gina xx

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  5. Hi Gina, i started on Methotrexate when i was first diagnosed but it made me really sick so am now permanently on Salazopyrin as a permanent daily RA drug. The trials i have had so far have been Humira & Enbrel, both of which i had to come off as i was allergic which was really gutting. Then i have had 2 consecutive years of Rituximab trials (you have them over so many weeks by IV in hospital) but this did not help. They try RA patients with many chemo type drugs because of it being an auto immune disease so i imagine the next trial will be a similar drug. I am not sure of the latest one Dr.Sam has in mind as he said there are two different one's coming out. I am guessing it will depend on availability. If you ever want to chat Gina my email is earlygirl1@hotmail.co.uk i find it really helpful talking with other sufferers. I am so sorry that this awful disease has effected you too Gina. I am nervous about the steroids & petrified of gaining weight!!! but at the moment i am willing to try anything. I have dramatically changed my diet over the past year and living a much healthier life which will hopefully help a lot. Hugs to you Gina xxx

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  6. Hi Clare...Well darling girl you already know how I feel about it all and you also know I am here if you need anything....Love you heaps marg xxx

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  7. Miss Clare, so glad you are able to talk openly about it all... will help in the healing process! You are an extraordinarly precious girl and have many friends and family members that will get help you through everything... not to mention your cyber friends. I'm here along with many others to listen, understand, lean on, cry with, laugh with, and have a round of chocolates with... If miss Helen leaves any for the rest of us!
    Love you dearly!
    Beav x

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  8. Hi Clare Hun...firstly this is a very big (and oh so gentle) (((((HUG))))) for you. I think you are both very brave making such a decision. The mess that comes with that sort of change will be the type that strengthens your being and allows for future growth for you. My little 11 year old niece/cousin (my aunt is my age and has a daughter the same age as one of mine) has recently been diagnosed with juvenile rheumatoid arthritis so we know there is a long road ahead of little Megs, and I am very keen to keep up to date with your progress too. Stay strong and resolved in your new direction sweetie. C xxx

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  9. Hello sweet friend...you are brave with all your RA, to pursue your new life without M. But I can also tell from your words here & the phone that you also have a little spark that is igniting some great bits of excitement for your life too. You know I wish you only wonderful things.
    Love Deb xoxoxo

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  10. Hey chuffy!
    Lets hope these new drugs help you feel a whole lot better hey?
    Will give you a call tonight xxx

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  11. Oh you poor babe you! What a lot of upheaval and stress. Hopefully things will work themselves out for you hun, and soon at that.
    Hugs from me,
    Teri xx

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  12. Oh guys youve made me go & cry again!!!! nice tears though i will add. Thankyou so much for your lovely words and it is those that give me strength & courage everyday. I do worry at times when i write my posts as i would hate for people to think that i am moaning!!! i do it not only as a kind of therapy but to hopefully help others, or just to have someone else (like Gina and Corrina) write and tell me their experiences with RA or life in general which in turn helps me. Also it's my blog and if anyone doesn't like what i write or gets bored with it doesn't have to look!!! thankyou so much my lovely friends, i love you all heaps xxx

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  13. So sorry to hear your news Clare - both lots!! It's good to hear that you are so positive about it all. I'm sure there are and will be tough times, and though it's no comparison for a real one, there'll be lots of cyber-hugs here for you if you need them. Take care of you.

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  14. I'm sorry to hear your new Clare. It sounds as though it is the right decision for both of you and I wish you a very smooth ride as you go through all the logistics.

    I am sending you many hugs with your RA too. You definitely don't sound like you are moaning! I see you as brave and strong and are coping with something that most of us couldn't imagine having to live with.

    Allie x

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  15. Hi Clare, sorry to hear your news. I've been there with the separation and divorce and mine was partly amicable but then it got nasty with finances, but you have to remain strong whatever the situation and I'm sure yours will be relatively simple. Stress can cause so many problems but once you start your new treatment and you start afresh with your life, everything will fall into place and you will start to feel better about everything. Its good to see you back blogging. Thinking about you hun. Take care, Claire x

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  16. Hi Mate, well a new chapter of your life is about to start and I hope it brings you and your hubby happiness. It's so good that you have both been able to stay friends and I'm sure your seperation will be much smoother for it. The new drugs sounds promising and hopefully the pain releif will have you feeling more like your chirpy self again. Lots of love and gentle hugs to you. Tracey x

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  17. Hugs to you Clare. All the best with sorting everything out, hope you find some relief with the RA.

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  18. Hugs Missy Clare. Hope all goes well with everything.

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  19. Hello you!
    I think you will now settle a little more knowing that the secret is out. You are by nature a coping and strong lady, you wouldn't be where you are now if you weren't, so I know the future will bring lots of new challenges for you to try. Some you will like and others you wont want to try a second time!!

    Dr Sam is looking after your RA and has realised he now needs to keep you on a closer rein!

    I hope that the coming months bring some much needed relief on the pain front, both of the heart and of the bones.

    I'll wait to hear from you when you are upto it!

    Love Keryn xxx

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  20. Sending you a great big hug darlin' from me and Holly Dolly. Sorry to hear that you have not been well and also that you are separating from your hubby. You are so brave to reach that decision together. My wish for you is that your future brings bigger and brighter things and that your RA settles down so that you can get out there and enjoy life! You have lots to offer!

    Luv Shelee :)

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  21. Hi Clare, thanks for stopping by and leaving some love on my blog! Just checking yours out, your work is beautiful!! Hug to you at this difficult time, hope you are feeling better soon, K xxx

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  22. Heya Gorgeous girl, Have been thinking of you heaps and Helen and I were chatting about you over the weekend.I do hope that you are feeling better on the RA score.Helen is worried bout you.
    I can't even imagine what it is like to have to live with that pain day in day out, so here's hoping that Dr Sam can help you sooner rather than later hey!!!!!
    As for the other info, you know how I feel about that, and i am so glad that you and hubby will remain good friends.So important, and you must both be very mature.It is good to know he will still be there for you if you so need it, and lovely to hear you will still be able to stay at the bungalow...no moving...yayayayyaya!!!!
    Love to you..xxxoo

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  23. hey clare, been thinking about you a lot lately... I must have felt something was going on. I know what it's like to live with pain everyday (although not to the degree you do I suspect) and I really, really hope that you are able to get it under control soon. sorry to here about you & hubby. much love xxxx

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  24. I am just heartsick over your troubles. It's bad enough with the physical, but now emotional too. I am so truly sorry that your are going through to much. You have to keep up your spirits though. That is so important to remember. Your mental state has such a control over your physical state sometimes and you must be mindful of that. I'm keeping you in thought and prayer. Hang in there kiddo! Best, Curt

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