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michelle1
Member since Mar-13-08
925 posts
Aug-13-10, 05:38 AM (EST)
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"Bad news"
 
I have been waiting 8 months for my mri scan and results and finally heard them yesterday. I think most of you know i have rheumatoid and psoriatic arthritus i am 30 this year and have suffered since i was a teeneager. My job as a carer never helped and i have had to quit my job as my left knee is seriously bad. The draining of the fluid the medication and steroids dont help anymore just make me gain more and more weight.My doctor is on long term sick so a trainee has given me a verdict. The is no damage to my knee on the cartilage. But the is severe swelling excess fluid between the bones and something else in there to do with the swelling. She says it wil always be the same i just need to becareful. They are refering me to the surgeon anyway to check if he thinks something can be done and to double check. She has told me though not to expect anything good just temporary solutions. I am on a years waiting list now to see surgeon. I am also on a waiting list to see her as she has never seen me before so i suggested it may help. All x-rays she said have shown the disease spreading. Which is why i am unable to exercise no more without crying out. I have a few months left before i start a new medication so i am praying i can have a child soon as after that there will be no chance.I have had many operations on this knee andhave been told eventually it will be a knee replacement.

She has promised once this all new medication to the uk is cleared i should feel the benefits.I am hoping so.Anyone else struggling with this?

Michelle
Wales (UK)


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  Subject     Author     Message Date     ID  
Bad news [View All] michelle1 Aug-13-10 TOP
  RE: Bad news lrveard Aug-13-10 1
     RE: Bad news michelle1 Aug-13-10 2
         RE: Bad news Sierra Aug-13-10 3
         RE: Bad news snoopy24 Aug-13-10 4
             RE: Bad news Catherineadmin Aug-13-10 5
                 RE: Bad news michelle1 Aug-14-10 6
                     RE: Bad news Catherineadmin Aug-14-10 7
                         RE: Bad news michelle1 Aug-15-10 8
                             RE: Bad news Catherineadmin Aug-15-10 9
                                 RE: Bad news michelle1 Aug-16-10 10
                                     RE: Bad news StephVogelsong Aug-16-10 11
                                         RE: Bad news michelle1 Aug-16-10 12
                                             RE: Bad news Catherineadmin Aug-16-10 13
                                             RE: Bad news michelle1 Aug-17-10 14
  RE: Bad news Catherineadmin Aug-17-10 15
     RE: Bad news michelle1 Aug-18-10 16
         RE: Bad news Catherineadmin Aug-19-10 17
             RE: Bad news michelle1 Aug-19-10 18
                 RE: Bad news lrveard Aug-19-10 19
                 RE: Bad news Catherineadmin Aug-24-10 20
                     RE: Bad news michelle1 Aug-25-10 21
                         RE: Bad news Catherineadmin Aug-28-10 22
                             RE: Bad news michelle1 Sep-01-10 23
                                 RE: Bad news Catherineadmin Sep-08-10 24
                                     RE: Bad news michelle1 Sep-09-10 25
                                         RE: Bad news Catherineadmin Sep-13-10 26

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lrveard
Member since May-7-02
6913 posts
Aug-13-10, 08:01 AM (EST)
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1. "RE: Bad news"
In response to message #0
 
Oh Michelle I am so sorry the news wasn't better. And that you have to wait so long to get the medical help you need.

One of my nieces has had rheumatoid arthritus since she was 3 years old (I'm pretty sure that is what she has). She is in her mid-20s now and as far as I know, doing pretty good. She was able to get the meds she needed when she needed them (and she was even in on some trials for new ones). She still has a tough time, but manages to live a 'normal' life. To look at her you'd never know.

I wish you luck with having another child before you start the new meds and that they find the help you need.

LighthouseLady/Lynda
East Coast of Central Florida


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michelle1
Member since Mar-13-08
925 posts
Aug-13-10, 08:57 AM (EST)
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2. "RE: Bad news"
In response to message #1
 
Thanks Lynda.

I live a pretty normal life and people will often comment because one day you are fine and the next it could all be terrible. I was doing well at control it until this happened with my knee. Does good for me to keep on the go and keep mobile. Helps with the arthritus. But with my knee so bad haven't done much exercise.

Fingers crossed for these new meds i have heard some good things about them if the government can afford it. No luck with a baby yet. It is strange because when i wasn't trying it happened twice although i had one miscarriage, and all this time trying and it just isn't happening.

I have heard of an arthritus support group in my area, i am just plucking up my courage to join. I am sure they probably have some great advice. I do not talk about it to any of my family. Only you lot on here really, i do not even mention it to my friends either. So the support group would be good for me.

Michelle
Wales (UK)


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Sierra
Member since Dec-28-03
1330 posts
Aug-13-10, 02:40 PM (EST)
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3. "RE: Bad news"
In response to message #2
 
It does sound like you and I have alot in common and I know the pain you live thru every day. I hope something can be done to help you.
Sierra


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snoopy24
Member since Mar-16-10
86 posts
Aug-13-10, 03:54 PM (EST)
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4. "RE: Bad news"
In response to message #2
 
   I am so sorry you didn't get better news Michelle! I hope you can have that baby you want before the new meds.

It's a shame you can't talk to anyone in real life about how you're feeling. We're here to listen though when you need us!

Beth


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Catherineadmin
Member since Apr-28-02
2182 posts
Aug-13-10, 05:20 PM (EST)
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5. "RE: Bad news"
In response to message #4
 
Michelle, I'm joining in with others to send you hugs. This is a terrible disease, and all of us feel for you. Have you considered knee replacement surgery? It's often done here with great success. I even know a lady who had all her finger joints replaced.

Keep your chin up, girlfriend.

Catherine Anderson
CatherineDirect@aol.com


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michelle1
Member since Mar-13-08
925 posts
Aug-14-10, 03:27 AM (EST)
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6. "RE: Bad news"
In response to message #5
 
Thanks girls. You have rheumatoid Sierra?
Thanks Beth i worry i am moaning too much most of the time so i don't speak to anyone here around me as it scares them off. I have scared all my exes off and friends with my Rheumatiod.
It would be nice to see someone with Rheumatoid as a heroine in a book as it does effect you even if it is not noticeable. And it truly does put people off that do not understand.My doctor explained that it is a disease was quite shocking when he explaned in depth.
Catherine, yes eventually i will need knee replacement but last time i saw the surgeon he said not until the bones have completely gone. As i will probably need a few in my lifetime because of my age.My mum has osteoarthritus. She has had a hip replacement and is having shoulders done. I am the will who will have to take care of her so i need to be in top form.Both my sisters are well have absolutely nothing wrong with them. I was very fit n school. I played netball, badminton, tennis, hockey.Arthritus is in the family but rheumatoid is less common in my family and i was shocked to hear people ahd died from this, very shocked.

I just want them to try and control it so i can get back to being more active as this i find sometimes helps my arthritus as long as i dontdo too much and build it up slowly.Do you think it will effect me being able to ride as my left leg is the seriously bad one?

Michelle
Wales (UK)


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Catherineadmin
Member since Apr-28-02
2182 posts
Aug-14-10, 08:35 PM (EST)
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7. "RE: Bad news"
In response to message #6
 
I know what you mean about a problem scaring people off. I learned a lot about that in doing research for my books about heroines who have real-life challenges and difficulties.

Maybe a knee replacement will be the answer for you. Joint replacement has done wonders for so many people. I have a good friend whose mother had both hip joints replaced when she was in her late 60's and she scurried around like a teenager for the rest of her life. I am so sorry you have to wait so long to see a surgeon. Have you considered trying for help sooner under medical tourism?

I must admit I don't know a great deal about rheumatoid arthritis, but I do know it can be incredibly painful. You deal with it in such a forthright, brave manner that I imagine you have many admirers you don't even know about.

Think of riding a horse this way: Once on a gentle horse, you will have five good legs instead of just one!

Lots of good thoughts are coming your way. Keep us updated!


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michelle1
Member since Mar-13-08
925 posts
Aug-15-10, 08:44 AM (EST)
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8. "RE: Bad news"
In response to message #7
 
Hi Catherine thank you for your support. The only way i can get help sooner is by the way of money as always.I will be fine. There are people put there worse than me and the nhs will do what they can with their resources. I know my doctors are really struggling at the moment but the government cannot afford any more money. Just got to push on and make the best of it. Sometimes i have a sit down and feel sorry for myself like i did the other day when i posted this but i am back up and ready to continue fighting. That is the best way to live a normal life. I know my limits now when to back off and let myself recover. I have spent too many years pretending there is nothing wrong and pushing myself too hard to keep up.

My husband and daughter is what keeps me going i have to be well for them. And i am getting on that horse and my daughter who turns 5 at the end of the month said she wants to come with me. As my doctor told me each srthritus sufferer is different and have different variations so i am to stop comparing myself to someone who it doesn't seem to affect the same way as it does me. Each person has different immunity and the spreading differs in each patient. He sat and told me this last time. I have listened now. I am sure i will be fine. Thanks. xxx

Michelle
Wales (UK)


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Catherineadmin
Member since Apr-28-02
2182 posts
Aug-15-10, 05:24 PM (EST)
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9. "RE: Bad news"
In response to message #8
 
When you post a picture of you sitting on that horse with a grin the size of Rhode Island on your face, I am going to be cheering so loudly you will hear me in the next county. And you'll do it. I love your spunky outlook, and I admire it more than I can say. Yes, I know, that's easy to say. But I mean it. You count your blessings rather than your woes, and that gets everyone's respect. I've thought of you more than once when I'm ready to bang my head against the wall, and trust me, writers do get to that point sometimes!


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michelle1
Member since Mar-13-08
925 posts
Aug-16-10, 04:42 AM (EST)
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10. "RE: Bad news"
In response to message #9
 
Thanks Catherine. As my grandad always said "there are always people worse off out there than you". How much i miss him.

When i am in too much pain to sleep i watch my beautiful girl sleep and see how much i am blessed and how i will get through anything for her. x

Michelle
Wales (UK)


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StephVogelsong
Member since Sep-18-08
357 posts
Aug-16-10, 10:22 AM (EST)
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11. "RE: Bad news"
In response to message #10
 
   Hi, Michelle-

I am sorry to hear how things are going. That some people suffer unnecessarily is tragic and so unfair! I echo Lynda: it is horrible that you must wait so long for an appointment with a specialist. TO me, that seems incomprehensible! Still, I will pray for you if that is OK with you. Recently I've renewed my faith to rely on the 'higher power' and I'm continually amazed, especially a couple times this past week, actually.

My husband is a pharmacist, I will ask him what medicine is helping his patients the most currently and let you know. I also know what it is like to want a child more than anything, as I was infertile for the first five years of my marriage. That is agony, and if someone hasn't personally endured that struggle it is hard to fully relate to the pain. I'm with you, friend. Reach out anytime, ok?

Hugs,
Stephanie Vogelsong


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michelle1
Member since Mar-13-08
925 posts
Aug-16-10, 11:36 AM (EST)
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12. "RE: Bad news"
In response to message #11
 
Hi Stephanie thank you.

I know i have my daughter so it isn't the end of the world but since i had that miscarriage i have wanted another. And when my doctor told me to consider it now as im running out of time i knew i wanted one for definate. Will see how i go andthen go on this new treatment i hope. x

Michelle
Wales (UK)


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Catherineadmin
Member since Apr-28-02
2182 posts
Aug-16-10, 03:23 PM (EST)
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13. "RE: Bad news"
In response to message #12
 
We're all pulling for you, Michelle.


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michelle1
Member since Mar-13-08
925 posts
Aug-17-10, 10:35 AM (EST)
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14. "RE: Bad news"
In response to message #13
 
Woke up today covered in psoriasis. in my hair, side of face and hair line behind ears, right down neck and armpits. I remember when i was younger people used to make fun of this and the boys never wanted to know. i am lucky though i have seen people with it worse i have a huge tub of cream and i am drinking plenty of water to try and sort it. It gets bad when my arthritus is bad as it is all linked.I sure dont feel attractive at the moment like a heroine in a romance novel.

Thanks for everyones support. xx

Michelle
Wales (UK)


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Catherineadmin
Member since Apr-28-02
2182 posts
Aug-17-10, 04:26 PM (EST)
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15. "RE: Bad news"
In response to message #0
 
Our hearts and prayers are with you, Michelle. You have many friends here who are pulling for you and hoping for the best. Please keep us posted with any updates, or even if you just need to vent. We all need that sometimes. Authors, too.

Keep a good thought for the guest ranch. How I'd love to know that happens for you!


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michelle1
Member since Mar-13-08
925 posts
Aug-18-10, 04:36 AM (EST)
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16. "RE: Bad news"
In response to message #15
 
I am sorry never meant to moan about my condition on here. Just no one else to talk to about it. x

Michelle
Wales (UK)


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Catherineadmin
Member since Apr-28-02
2182 posts
Aug-19-10, 05:18 AM (EST)
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17. "RE: Bad news"
In response to message #16
 
You're not moaning, my friend. You're sharing with friends. That's what we're here for.


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michelle1
Member since Mar-13-08
925 posts
Aug-19-10, 07:10 AM (EST)
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18. "RE: Bad news"
In response to message #17
 
I have received a letter from a doctor to go and see her on my daughters birthday she is going to drain my knee and put steroids in. And refer me where she feel is best. I am sure my daughter will enjoy being in the hospital. She hassles the nurses and doctors asking them questions and tidyign up.lol She has often wandered off with a nurse and come back with a poor doctors stethascope around her neck. She wants to be a vet, but says she wouldn't mind helpng people too.

Michelle
Wales (UK)


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lrveard
Member since May-7-02
6913 posts
Aug-19-10, 06:20 PM (EST)
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19. "RE: Bad news"
In response to message #18
 
Hope this doc will be able to help, and get to to the right place too!

Your daughter will love spending her Birthday at the hospital! What fun. Sounds almost as good as going to Disney!

LighthouseLady/Lynda
East Coast of Central Florida


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Catherineadmin
Member since Apr-28-02
2182 posts
Aug-24-10, 07:25 PM (EST)
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20. "RE: Bad news"
In response to message #18
 
Let us know how this comes out, okay?


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michelle1
Member since Mar-13-08
925 posts
Aug-25-10, 02:53 AM (EST)
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21. "RE: Bad news"
In response to message #20
 
will do Catherine, my mum is driving us in as i will notbe able to drive afterwards as the needle goes so far into my knee to drain it. It feels weird for a while so i do not want to drive in rush hour traffic. This hospital is further away so would feel safer not driving.

Michelle
Wales (UK)


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Catherineadmin
Member since Apr-28-02
2182 posts
Aug-28-10, 02:57 PM (EST)
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22. "RE: Bad news"
In response to message #21
 
Keep us posted. We are all pulling for you.


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michelle1
Member since Mar-13-08
925 posts
Sep-01-10, 02:43 AM (EST)
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23. "RE: Bad news"
In response to message #22
 
I have had some steroid injections and fluid taken from my knee. Until i decide to go back on meds there is not much to be done about arthritus but the problems with my knee he thinks are due to my job. I told him i quit as i have no childcare and he says to see how it reacts now.

Michelle
Wales (UK)


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Catherineadmin
Member since Apr-28-02
2182 posts
Sep-08-10, 02:10 PM (EST)
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24. "RE: Bad news"
In response to message #23
 
Let's hope that less activity helps. Knee pain is just about the worst there is. I think it even tops back pain, and that's going some.


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michelle1
Member since Mar-13-08
925 posts
Sep-09-10, 08:02 AM (EST)
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25. "RE: Bad news"
In response to message #24
 
Hi Catherine.

I suffer with back and neck problems with arthritus but this knee problem is terrible just aches all time.

I get up in the night and march up and down the bedroom lol. My legs get restless. It also deprives my hsband of sleep me marching around but i said if he loves me he will just ignore it. Which he usually does.My other knee has started too and my elbows and wrist i got to bed looking like ive been in a fight. lol. My husband laughs as i have wraps on my knees elbows and wrists which comes over my fists and looks like im going boxing.

Michelle
Wales (UK)


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Catherineadmin
Member since Apr-28-02
2182 posts
Sep-13-10, 03:32 PM (EST)
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26. "RE: Bad news"
In response to message #25
 
He sounds like a terrific guy!


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