Roll Call: JULIE? | Arthritis Information

 

Anyone seen Julie since yesterday?

Girlfriend you can't say stuff like that and then dissappear....you'll worry us to death.

 

 

She came back to talk about her baby saying Daddy.  I think that was after that worrisome post.  Julie, are you out there?

 

 

        Also posted a few hours ago about CCP #s

I'm here - sorry I've been numb.  Freaking out but I'm back on board.  So sorry guys thanks for putting up with me.  I've have a pretty bad run of stuff in the last few years and this nearly put me over the edge, but I'm hanging on - thanks to you guys and all the praying I've been doing.

I'm going to a good place on Monday in leeds - you want to hear all about it - I've copied the info for you - it's 4 hours away on the train but you are right - i need to fight this for austin and I will.  here's where it is -  again - i'm so sorry- I've been a state but I'm trying so hard to turn the corner right now so thanks for hanging in there with me.

Oh listen I can't do a link thing coz i'm a doughball - i'll just have to type it out sorry

www.arc.org.uk/newsviews/arctdy/101/fonleeds.htm

Julie; this is fabulous!!

How did you hear about this? Did you doctor refer you here? Will this be covered through your health care system there?

I'm excited about this!!

Julie,  I checked out link.  That seems like such a cool place.  I wish I could go there   Oh I could just cry to hear from you all - you mean so much to me.  Thank you so much for haning in with me.  I found it on the arthritis care web site in the UK.  I spend a lot of time on the net coz I'm usually on at weird times compared to you guys.  I've been so messed about by the rhuemy's here.  I think the worst is that my family haven't believed me.  They sure as hell do now.  Now they are all doing the crying thing and looking at me with 'the look' you know the one that you expect to see when you're on your death bed.  The sad thing is, I'm moving back to Glasgow in Scotland where I've lived all my life, next week from a place called Ayr that I moved to when I went to Uni 4 years ago.  Thats where I met my hubby.  Its quite painful just now because when I left i was well and a feel like I'm returning a mess.  The thing I'm hating the most at the moment is that I feel RA is taking away my chance to plan for the future.  I was a terrible day dreamer you know, planning this and that.  I saw all these mummy's down in the park with their babies today and I was limping along with Austin - it's just breaking my heart just now.  I think I'm must frightened because I seem to have all the markers for poor prognosis.  I'd love to post my wedding photos for you to see and a piccy of Austin but I don't have a scanner so I'll need to get on to that.  I was checking out yours the other night and you looked so beautiful, you all did, it was lovely.

You know what, I need some success stories, is anyone doing really well that's had a poor prognosis?  Is anyone leading a good life right now.  I've not had a flare since last thursday (I think) but every day especially when I wake up, my feet, ankles, knees, left elbow, right shoulder and left jaw hurt.  The doc put the fear of the lord into me the other day by saying good god it can't be ra - it can't progress to your shoudlers and your jaw in 11 weeks!  I nearly peed my pants on the spot with fright. (sorry to be so graphic but i'm not kidding).  


Julie,  I have been much better since they put me on the initial medications.  My rd reminded me that I could barely walk only four months ago when I first saw him, I got my diagnosis 3 months ago.  I am still waiting for the biologic Enbrel but the treatment I have been on has already helped.  My rd wants me to try weight training and I will when I am having a better day.  Balance between exercise and rest.  That is what I am learning.  Also to use the pain meds but don't overdo them.  It is a learning process.  I am not scared anymore.  I get angry at RA but I am not scared.  I also have plenty of plans that have not changed since RA onset.  Things will get better Julie. 

 

Blessings,

TaraJulie,

Lovely to see you back, glad you're feeling a bit more positive. Good luck with the clinic in Leeds, keep us updated with how things go won't you

Today we had a team building exercise in preparation for the new school term. We have ten new staff this term. We did team building scenarios and before lunch built rafts. After lunch we took them out on the water (sea) and raced them. It was a blast!! I had the best time !! Will post some pictures when they get emailed to me!! RA will NOT stop me having fun and enjoying life!!

Debs x

Of course it can affect your shoulders and your jaw in 11 weeks. He's an idiot Julie!! Stop listening to him!! Some people go from fine to bed riden overnight. He's a fool who knows nothing!!

I can't wait for you to go to this clinic. These are experts in this field and it takes experts to treat this.

We're all success stories here Julie. Eventually you might change your opinion of what a success story is.

I'm a 34 year old mother of two awesome children. I'm young compaired to some here....I don't know your age; but I imagin you are about the age I was when this all began for me close to 12 years ago. When I first began I couldn't hold a toothbrush in the mornings. I could barely work the buttons on my blouse (my hands were badly affected early on), Drying my hair with a blow dryer just about killed me; my shoulders were in such bad shape. I walked like my 80 year old grandmother; her and I had more in common than myself and anyone my own age.

All of my blood work was negative from the start. But my doctor didn't hesitate to dx me with RA the first day she saw me. I had all of the other symptoms including swelling that on certain days was quite obvious and other days no one knew was there. 

My doctor never said....you've got a horrible case, or this is the worst I've seen or it's not that bad....or you could be worse....or consider yourself lucky. I've had three different RD's; all wonderful doctors but none of them talked in those terms....and I've never let myself think like that either.

I started out on fairly mild DMARDS in combination with different antiimflamatories, cortisone injections here and there...as well as the occasional predisone boost; and over time I've had to increase the dosage to control things....and after years and years I've been put on MTX & use Humira; but I've never in my entire life been as happy as I am right now.

I have a fantastic relationship with my husband/best friend (Granted he's my second). I have two fabulous children who I adore...one of which is getting ready to get his drivers license...another who is the sweetest 11 year old daughter a mother could ask for. I also have two great step sons I adore....and a fabulous career where I am needed, respected and admired (As well as earn a decent salary to contribute to my families finances).

Yes; sometimes I walk with a limp and sometimes my hand writing is sloppy. It's not always...but it's something I've just learned to live with. I'm no longer embarrashed by it. I've learned that so many other things in life are more important. Yes; sometimes I'm extrememly tired and have to pass on things I'd like to be doing. Sometimes I'm not up for everything I wish I could do.... But life is good.

Come on you guys.....give this lady YOUR SUCCESS STORY; life with RA is not nearly as bad as you've got imagined. This is a treatable disease Julie. You going to this clinic is going to be the first step in getting you going again. It's my every hope that there you will learn that you've got a lot of life ahead of you.

(Sorry to get up on my soap box...again!!)

*Raises hand* I've never felt better in the years I've had RA! I was crawling around the house cuz I couldn't walk...our son was 7 years old, I crawled to the tub and my boss had to pick me up and carry me out of work..it was that bad at first.  You can feel better but it takes time.  Now I'm doing most of my regular things...I still want to pick up a bowling ball .. I was on a league a couple years ago til my hands were acting up.  I feel like I'm almost there..maybe another month on Humira will help.

The  worst time I think is before diagnosis and getting the meds right. Hang in there...there's a lot of hope for you.

Good for you Julie, I'm so happy for you.  YOU WILL feel better and this disease will fade in the back of your mind instead of staying "Right there on Top"  Of course it will be with you daily but it will be just background noise persay and you may find that instead of thinking...omg...what am I going to do about this RA...you will be thinking....oh s**t...I must hurry and get to the bank, then gotta run here...and run there ...yadda yadda yadda. I wish you luck Julie.

Sorry everyone thank you too - that was lovely to read - I didn't see your posts there (i'm a bit slow) Julie,

Read this and repeat - I am not a burden, these are my friends and they care for me. . .I am not a burden, these are my friends and they care for me. . .

You will get it together . . give it a little time!!

Deb x

Deb's right...repeat:

"I am not a burden, these are my friends and they care for me...I am not a burden, there are my friends and they care for me...."

I don't ever mean to be harsh...Don't ever take it that way. Sometimes I've got that tough love thing going for me.

It's going to be fine Julie. It's all new and no one expects you to accept it over night. Trust me when I say....none of us did.

Julie, you can do it.  Remember what my rheumy says, "you are a person with RA"; you are still you.  So you have to make adjustments on some days, but other days will be great.  You just wait and see!Ok, I'm going to seem a bit harsh...but unfortunately it sometimes takes that to get this message through.  A diagnosis of RA does not mean the end of your life.  Not even close.  It means changes.   It means needing to do things differently.  It does not have to signal an end to your dreams. But, if you continue to be mired down in worry, stress and fear, it will eventually get the best of you.  
I was told as a child of 7 or 8 (possibly a little older) that by the time I was 16, I'd never walk again.  I also wouldn't physically be able to have or care for kids.  I'd never work.   Keep in mind this was a time when RA was not aggressively treated in children.  In fact, many common meds that have OTC forms were just being studied in kids...ibuprofen and naproxen.  I was in studies of both of those.  I was also told my case was moderate/severe despite a lack of any postive labs.  NONE!  Occasionally my SED rate was a tad over normal but only if I had an infection at the time.  Until I was 25 I was given no DMARDs, no pred, and in fact only had ibuprofen and naprosyn as treatment along with PT and OT.  All of this with definite damage showing on x-rays...I could see it and I was a kid.   Still to this day, my labs are normal.  And there's more damage. 
But you know what....I wasn't allowed to give in and mope around thinking my life was over.   If I couldn't do something, I was helped into finding an alternative.   And the doctor's "threat" of not walking, not working, not being able to have and care for a child, were all wrong depsite not being properly treated.   And on top of that...I've had fibro, OA and osteoporosis diagnosed as well as suspecting a few other things like IBS, and Sjogren's.  
From the time I was 16 until I was 26 I worked full time or even much more than full time.  I gave birth at 25 and despite warnings as a child that it would be nearly impossible to naturally give birth...I delivered my son with little meds, and no c-section.  And it was an easy birth.  He's well cared for and happy today.  He, at the age of 3, understands that mommy can't do everything and that he can be helpful to mommy as well.  And he understands if he wants to do something I can't, that we'll wait on that until I either feel well enough to do it, or Daddy will step in...and if I can't manage doing certain things with him, well it frees me up to do other things with him that are easier on the body.
I'm not saying this to be hurtful or to imply that you are imagining things...but if you're having this much trouble with being so devastated by a diagnosis and you feel suicidal, you really do need to seek out counseling.  I've been there and done that.  Depression is common with any chronic illness.  Nothing wrong with getting help over that.

I don't think it's harsh wayney....I don't ever remember feeling suicidal either...I just wanted to go to bed, hide under the covers and  sleep  I'll admit Murphette that even after 21 years of dealing with this that I have my hide under the covers and sleep days...usually that's the fatigue talking though.  I've always been a fighter and even now, watching my son in pain, I'm teaching him to fight it too.   Anything else and you let RA win.  

The hard facts....Not Sugar Coated. This is why we love you Wayney!! And you are exactly right.

After you're visit to the clinic next week Julie, if your outlook on things has not changed...and I believe it will once you've talked to these people; I totally agree with Wayney. Counseling should be considered.

 

 

[QUOTE=julie]You know what, I need some success stories, is anyone doing really well that's had a poor prognosis?  Is anyone leading a good life right now.  I've not had a flare since last thursday (I think) but every day especially when I wake up, my feet, ankles, knees, left elbow, right shoulder and left jaw hurt.  The doc put the fear of the lord into me the other day by saying good god it can't be ra - it can't progress to your shoudlers and your jaw in 11 weeks!  I nearly peed my pants on the spot with fright. (sorry to be so graphic but i'm not kidding).  
[/QUOTE]

I had RA diagnosed a year ago, and the pain and stiffness was so terrible, I thought I would never live a normal life again.  I barely slept, I couldn't go anywhere with friends, I would stand in the boiling hot shower all day, I was grumpy and extremely iratable etc.  It was horrible.  My Rheumy started me on Pred, and gave me some pred. shots in the butt (lol) to get all my joints calmed down.  They were SO bad. 

Now I am on the meds in my sig line... and I feel practically normal compared to the way I felt before!  Sure, I have pain, but I still call my story a success story!  I have my life back.  I can do all the things that normal people do, other than running or hiking up the side of a mountain (knees and ankles will start to hurt.)

Keep your chin up.  Success is waiting for you to arrive!  I hope this new doc you are going to go to, will help you out.

By the way- I had all my RA show up within a couple of months, and it effects pretty much all my joints.  Some more severe than others, but pretty much all of them.  I am surprised your Doc said RA could not do that.  I think it can!  I just think that a lot of people don't go to the doc's soon enough, and it progresses faster than they think.

 

[QUOTE=wayney]Ok, I'm going to seem a bit harsh...but unfortunately it sometimes takes that to get this message through.  A diagnosis of RA does not mean the end of your life.  Not even close.  It means changes.   It means needing to do things differently.  It does not have to signal an end to your dreams. But, if you continue to be mired down in worry, stress and fear, it will eventually get the best of you. [/quote]

VERY GOOD point.  This is so true.  The more I think to myself "this is really working, I am feeling so much better, my life is getting better, things are working out, I am so thankful"....etc. the more those things actually come true. It is all about a POSITIVE ATTITUDE!

This is your best weapon. I'm a firm beliver.

OK  My two cents.  I do remember not very long ago thinking - If this pain is what life is like with ra, then I don't want this life

Now this sounds like so much fun Deb.  I want to be on your team

I was diagnosed when I was three and told I'd end up in a wheelchair, go blind, never work, never live a normal life. That wasn't good enough for me. I have done everything I have ever dreamed of and more!

My story is a lot like like Wayney's. There wasn't aggressive treatment when I was a kid. There were gold shots that did nothing for me. I limp, I have grandma hands, I can't open jars, or do cartwheels and I've had more surgries than I can count. But so what?

I work full time, I travel, I have fabulous friends and family, I'm getting married, I love to cook and watch movies, I laugh every day. Sure, I have my down days too. The trick is not to let the down days consume you. Counseling can help too if you're struggling with this.

The key is balance between the right meds, lots of rest, exercise (when you're ready and able) and a really positive attitude.

Hang in there - it does get better!

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