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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Having been admitted into the general early Thursday morning following severe complications once more and eye watering crp of 258 this time I've decided I'm not having the drug again This leave me no options I've cried a lot today over this but once I'm stable enough to go home that is what I shall do I still need an urgent MRI There's no sign of infection but of course the team here are all desperately hoping there is one There isn't of course It's their damned drugs Their dammed awful drugs that I just cannot do any more I feel utterly exhausted and so sad to have spent more trips in and out of this hospital than I can count often for a week or 2 waiting for things that dont co-ordinate... I'm so poorly with such aggressive disease but this is better with pain relief and bits of steroids plus I'm going to ask the go to stop my periods. It's better than being terrified of the next drug reaction that could kill me and send me wailing into agony without backup I have heard about this Prosorba Column It's a non drug option Has anyone tried it? It's not have some gnats pee honey It seems bone fide Do you know of it My rheummy teams crest fallen faces seeing me in hdu on Thurs were a sight I will never forget They tried hard too Endocrine consultant tomorrow I just want to thank you for reading and not giving up I'm trying hard not to give up too Love to all Jenni xx how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 6/18/2010 Posts: 351 Location: Herne Bay Kent
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Dear Jenni
I am so sorry that you have had such an awful time of it and that even with all the efforts of the doctors and yourself this treatment is not working.
I don't know what to say but just wanted you to know that I am praying that you will get some relief and be able to go home to be with your lovely family.
Your courage in the face of such adversity has amazed us all and we hope that your strength will be renewed.
With love
Sue
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Rank: Advanced Member  Groups: Registered
Joined: 9/27/2010 Posts: 136 Location: Stockton on Tees, Cleveland
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Oh Jenni
You seem to have such a raw deal with this illness, it seems so unfair. It is so sad that none of the drugs can help you, and I am at a loss of something positive to say. Keep fighting and look at the positive things in your life like your family and friends.
Thinking of you
Louise
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Just thank you for being here Witness to how hard I've tried when the professionals make you feel you've wimped out on some half baked theory I thank you for trying to understand when others turn away Jenni xx how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 119
Location: warrington
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you don't deserve this Jenni words are not enough. thinking of you. hope you are home soon with your family. pray that they, and all of your friends on here give you the strength to keep fighting.
xx sue v
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Rank: Advanced Member  Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
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Hi Jenni
You've been so brave with everything, I think you are well entitled to a good cry. I know it seems hopeless, but you have a lovely family and lots of friends supporting you here. We all wish we could do more to help.
Will be praying that God will give you the strength to continue and to do what you can do.. and not worry about what you cant.
You are very much loved by everyone.
So a very big hug
lots of love
Anne xxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Jenni we will never give up on you, we will always be here to support you. Not much practical help I know, but it might just help to know we are all rooting for you.
Of course if the hospital care had been better and more co-ordinated, things may have been different for you.
I haven't heard of Prosorba Column but will google it.
Hang on in there Jenni, sending lots of love and gentle hugs.
Hope you can get home soon.
Love Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
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Oh Jenni it brings tears to my eyes reading your message. Iam so, so sorry to hear you are having such an awful time, It must be so worrying for your family too. I really hope that you will be feeling a bit better soon, even a small improvement is so good when you feel so low and so crap. I have only just started using the forum and do not know which treatment has caused you this much trouble but it sounds horendous. Anyway, I wish you the very best thinking of you. Zena xxxxxx
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Rank: Member
Groups: Registered
Joined: 9/29/2010
Posts: 27
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Oh Jenni - this just seems so unfair, you are an inspiration to all of us. I was feeling down today as MTX injections have started making me sick. Having read your post I realise I have very little to complain about.
Fingers crossed for you going home soon.
xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hello all The drug is no 17 having flunked them!!! It's cyclophosphamide this time Ive seen the dr team this morning They're desperately trying to find infection of course because it's never their horrible drugs is it?! No evidence so far... It feels a bit like the hunt for weapons of mass destruction in Iraq I'm feeling a bit less teary I have a Christian faith and that's helped me through a very gloomy night Right now the plan is to keep me here More steroid and anti biotics Endocrine dr has deferred to rheumatology reAlly I asked the endocrine dr to cosy up to me and give me a long term steroid plan that won't kill me. He said that's for you and the rheumy to discuss if you are in conflict that's another matter to openly discuss I said there is no conflict He's a good man A good dr And he fights to get his patients well And he believes in his drugs He will always always treat Opt to hit hard with drugs He's very knowledgable and proactive Almost impossible to track down But when push comes to shove he comes And The endocrine people have asked he be contacted They thought I'd had an infection that hadn't properly gone in Jan and it re emerged Unfortunately I don't fit that The ra just got worse Then I agreed to do as they said To face the cyclophosphamide again Even after I was so sick in Jan and put in hosp I have tried I really did try how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 154
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Hi there jenni
Of course you tried, noone has tried harder than you have. I dont have the words to express how I feel for you, but I do and am thinking of you all the time.
I absolutely empathise with your need to get home and managing with big pain relief and steroids have got me by when drugs have had dire consequences. Steroid management is key and I think the huge doses cause such wobbles with the endocrine system. But the docs who care for us just want to relieve their patients' pain and steroids are effective weapons when all else fails. The endocrinologists and rheumys need to work together really.
I have heard of the Prosorba column - some years ago now.
We wont give up on you Jenni and will always be here for you. It's always darkest before the dawn and sounds like it was for you last night.
Hoping so much that you will feel a bit better soon and that your hospital stay wont be too long. Being with family is what you need and you will be as soon as the docs are happy for you to go.
Stay strong, your friends are with you,
Love Lizxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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OH Jenni - haven't really been around for a while and am just catching up with everything that is happening to you. As Liz has said - there really are no words to ease the pain and helplessness but we both know that when we are at our lowest ebb, Jesus stands beside us. He doesn't stand on the top of the pit trying to pull us out, He is in there with us, suffering alongside us.
Will be in touch later - just off to the docs
MUCH MUCH LOVE FROM US BOTH XXXXXXX
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Jenni-you must do what YOU have to do . Whatever happens we are here for you. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Jenni I was so sad to read your posts, you know we all care so much about you, and understand more than most what you are having to go through in recent days. You have always remained strong and positive with every turn of the disease and I know you always will. I googled the new treatment Prosorba column and seemed a good course to take, I know you have much faith in your endocrine man. I am always thinking of you, you ve made me smile and chuckle with your posts,in my own dark times, when I know it hasn t been easy for you. If I didn t live so far away, I d pop in with grapes ( if it was cherries I d eat the lot ! don t mention crunchie bars, I m addicted at the moment, its not my fault they are on a special in Asda )  All my love Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Jenni,
as with everyone else my heart goes out .. you are showing great courage and i can't begin to imagine how much pain and anxiety you're in,
truly hope the RA team get a plan to give you some much needed relief,
you are an inspiration on the forum Jenni and i will keep everything possible crossed that we hear some positive news from you soon,
take care,
much love Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Jennie
Well not sure what to say to make you feel any better. I cannot believe it another course and another
disaster. Poor you. You are a very strong person and as you say your 'faith' will see you through. You
are amazing Jennie and help us all through our difficult times, so I really do hope your RA Team do come
up with a plan to relieve you of the dreadful pain you are in. You have a young family you need you so I
hope you get home soon.
Love to you Jennie.
Rose x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Right Bit of a positive result Rheumatology consultant coming to see me in here tomorrow First thought 'yay!' Next thought 'eek!' What on earth do I say He'll be disappointed and try and say have enbrel again or try gold or something else He's trying to help I know Apparently they are changing my anti biotic again What am I going to say? I like him I respect him But I love my family and I cannot do this again I just can't I feel it's the plasma exchange or the column thingy or really it's nothing else Perhaps a change of opinion but really I don't think the expertise is missing I don't want dr Edwards to feel he's failed I can't recommend him more highly Ideas?! Jenni xx how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/7/2009 Posts: 262
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Hi again Jenni,
I'm so very very sorry that this has happened to you again.
You couldn't have tried any harder and now I think you need to go with your own instinct. Just googled the prosorba column, sounds interesting.
I hope youre feeling a bit better very soon and that you don't have to stay in hospital too much longer, I know you must be desperately wanting to be with your family and that being at home with them will make you feel somewhat better in itself.
Words seem so inadequate but please know that you are always in my thoughts and prayers. We are all here for you. Try and remain positive, as you always do.
Much love and hugs
Diane x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Jenni
I have been thinking about you all weekend when I saw you were back in hospital. I am so, so sorry that you are now at this stage. It is a dark tunnel which all of us dread entering but you must look for the light in whatever form that may be.
It is good that your Consultant is coming to see you tomorrow. I think there is a lot of talking on both sides to be done and then I think you must then go away and discuss what you do next with your family. Do not be rushed into anything else. You need time to think about your options. Whatever you do, you must not feel a failure and you must also not feel like you are letting your Consultant down. Yes he is an expert in medicine but it is your body and only you can know what you can tolerate and what you cannot.
I am going to be candid, and although I do not know you well, from what I have read I think you have put yourself through an awful lot over the last few months. You are also talking about having knee surgery and that is going to be a very large challenge for you to get over.
Whatever you decide Jenni, you will always have my support and prayers.
Good luck for tomorrow and I will be thinking about you.
Jackie
xx
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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So sorry to hear you are back in hospital Jennie - what a horrible, scary time you are having. If 'trying' was going to make you better, you's have been running the marathon in April. You have tried hard, year after year, and mustn't let this latest setback make you doubt it.
Will be thinking of you tomorrow as you see the Consultant. Hoping that, even if there is no one simple answer, they can come up with a range of things which might get you back on track. Sending you lots of love xx Ailsa
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