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Author Topic: Saw arthritis lady today.  Jee whiz, my body SUCKS  (Read 15681 times)

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Offline rhea

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Saw arthritis lady today.  Jee whiz, my body SUCKS
« on: August 31, 2002, 05:49:21 AM »
Hi Everyone

I had a wonderful occupational therapist from the arthritis society visit this afternoon.  She stayed 2 hours asking me questions and assessing my condition.  She did a joint count and I have 19 active joints.  I have three fingers that are in the begginging stages of a bouladeer (sp? anyone?) deformity.  She will fit me for 3 finger splints to prevent those fingers from further deformaty.  I will have to wear these splints 24/7....that includes school.  But she assured me that they aren't horrendous looking.  She said that my left wrist and all of my finger joints are visibly inflamed and swollen.  The cracking in my wrists is likely a result of the progressive JRA, and that I will need splints for both wrists to wear during activities such as typing, or using crutches.  All of our furniture must be elevated to help take the strain off my knees.  I have to get a suction cup reacher and a bath seat.  My lack of appitite, severe fatigue, vision disturbances, and hair loss are all signs that my internal organs are also being affected.  She is very disgusted, appauled, and angry that my condition has been left for so long.  She says that I have a lot of damage in my knees, fingers, and wrists...most of it irreversable and would never have happened had my condition been caught in the early stages.  She will be writing a letter to my GP expressing her findings and my need to see a rhuemy ASAP.  

All in all, this visit has been alarming and relieving at the same time.  Im not crazy after all!  Well look at that...there IS something the matter.    Im not just some hysterical teen who needs to get a life.  So now Im going to go through my GP and fight for an appt with a rheumy.  She strongly suggests Dr. Thorn from Barry (ontario canada).   She says I will be put through a course of several drugs and will eventually find something that will put my disease in remission.  Until than I must take it easy, rest often, wear these splints she's going to size me for, and look after my joints.  

I want to thank all of you for your support and encouragement through this difficult time.  I am feeling a bit overwhelmed and shocked, but I will get through this.  This therapist is wonderful, and seems to actually be concerned for my well being.  She is going to help us apply for funding through easter seals to cover some of the expenses of all of this equipment seeing as my dad's insurance kicks out in a few months due to him having to retire for health reasons.

Thanks again everyone!  I hope you are all well and in as less pain as possible.

(((hugs))) n' healing

rhea

7 yrs of knee troubles (maltracking, maybe plica).  
Finally found wonderful OS(#4)!
Diagnostic scope+biopsy schduled for sept 23,2003  
HMS/EDS III
Chronic joint pain,subluxations,microtraumas...

Offline khaoskat

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #1 on: August 31, 2002, 06:38:54 AM »
Rhea:

I am so happy that you finally got a diagnosis of what is wrong, but I am also very sad that it is JRA, and that it has gone on for so long, without being caught.

I really hope that everything goes well for you.

Khaoskat

Offline Ross

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #2 on: August 31, 2002, 09:31:47 AM »
rhea, if you can put a name to it you can start to get better!  Got me beat how they missed arthritis, normally they'd pick it up with a blood test I'd have thought.  Time to work on your serenity mate, relax take a deep breath and empty yourself of everything.  

Relax, be peaceful and serene, gain positive strength to help you defeat the arthritis.
I'm a grumpy old bear with a busted knee.  The growling you hear is my tummy rumbling!

Offline Shazinoz

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #3 on: August 31, 2002, 11:33:03 AM »
Rhea,
Sorry to hear that it is JRA but I am glad that you FINALLY got a diagnosis. Yes seeing a Rheumatologist is very very important (I have been under them since I was 12 when I got JRA mainly in my hips and pelvis). I did eventually go into remission and only have occasional flare ups. MY athritis can still be seen in blood tests with an elevated CRP and ANA.
I hope that now you will get the correct treatment to help put you into remission. If you ever need to chat then feel free, I know what you are going through (I am 31 now). I mainly flare up if I do to much (or at that time of the month). There are lots of treatments for JRA and now that you are diagnosed then maybe you school can also help you out a bit now with home schooling type stuff for those days when you are just too sore or tired to attend (you should talk to them and see what they have to offer for you). I hope that you get your braces and splints soon as these can help a LOT, and make life soooooo much easier. Good Luck and stay positive (there is life after JRA and during it too  ;) ).
2 ACL 'reco's', 3 'scopes', Pain, JRA, EDS, RSD, CMP, osetochondral defect & #, synovitis, adhesions, nerve damage, foot drop, MCL damage, tendonitis, fibrosis, ligament damage AGAIN, dislocations +++

Helen_uk

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #4 on: August 31, 2002, 02:27:18 PM »
Hi Rhea I am glad you have finally got a diagnognosis and that you can move forward.
My jra went undiagnosed. It was called growing pains then but now we know better and although you have had to wait for a diagnosis at least you can prevent further damage.
You are one brave and plucky girl good kuck
H xxx

Offline Liz_-_UK

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #5 on: August 31, 2002, 05:07:30 PM »
Rhea,
Wow - that's some list of things to do or get! But at least you have a positive diagnosis and maybe your GP will be more supportive now.
At least you know what you are dealing with, and it sounds like this woman is a godsend so keep in touch with her!
I know it all sounds scary but there is hope and you will get better. Just keep going!
We are all here for you if you need us.
(((Hugs))),
Liz
xxx
03/95 - LR on left knee, 08/95 - LR on right knee, 03/98 - failed TTT left knee. Several scopes. 12/01 TTT and LR on left knee. Great for a while but now more problems.

Offline rhea

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #6 on: August 31, 2002, 06:13:35 PM »
Thank you Khaoskat, Ross, Shazinoz, Helen UK, and Liz- UK for your words!   Knock on wood... I don't think getting a refferal from my cranky GP will be to hard now that this women has written him a letter.  I'll just show up with all of my splints and my cane and scare the HECK outta him!  Now my dad also believes that I have something wrong with me.  He's actually MAD at our GP for not catching this, which is pretty unusual b/c before he's always been buddy buddy with him.  The only thing that is getting me a bit is that my parents are treating me like glass.  Now that they've been told Im so sick, they're babying me.  Bringing me pillows, treats, etc...like I can't do any of this myself.  And there worried whisper conversations are at an all time high now.  Oh well, at least I won't have to worry about looking lazy when I require a nap.

Thank you again everyone for your support.  And thank you, those of you who have shared your expience with JRA with me.  If you don't mind, I'd like to IM you guys with a few questions about  your JRA.  

(((Hugs))) n' healing everyone

rhea

ps, Ross:  I had a blood test and a bone scan for RA and both came back negative.  But this lady tells me that 60% of people with JRA don't have it show on tests.  Now why didn't my GP know that?  Time to do some relaxing with the poodle! ;D
7 yrs of knee troubles (maltracking, maybe plica).  
Finally found wonderful OS(#4)!
Diagnostic scope+biopsy schduled for sept 23,2003  
HMS/EDS III
Chronic joint pain,subluxations,microtraumas...

Offline Helen

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #7 on: August 31, 2002, 08:23:59 PM »
Hey Rhea

Im sorry about the diagnosis, but it must be such a relief that they've finally diagnosed something treatable. At least you can now get on with dealing with it in a positive manner.

Humour your parents a little if you can. As one (a parent I mean) and having gone through the really terrifying experience of a child being diagnosed with a nasty and possibly lifelong condition I can understand what they are going through. Its truly awful to know that your child is suffering and you cant do a thing about it. If it gets too claustophobic, just sit them down and explain that although you understand they are worried and want to help, the only way you have of dealing with things is get on with life. Ask them if they could wait until asked before helping you and remind them that doing everything for you is not going to help in the long term. It will ease off I promise. It'll just maybe take them longer to adjust than it will you. Parents are never as resilient as their kids.

Hope things get better for you now that you have the support and understanding that you deserve.
Helen
04/07/02 RL - patella tendon realignment, LR and meniscus trimmed. RSD set up home shortly afterwards....typical.

Offline Grace

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #8 on: September 01, 2002, 06:17:23 AM »
Hi girlie!! I  too am sorry to hear it is JRA, but thank god someone finally came forward with a diagnosis and is going to help you!!!!

I am sure its like a huge weight has been lifted off your shoulders!!  

Keep in touch and let me know how you are doing and keep youre chin up...things are gonna get better now!!

Good luck and lots of hugs and luv - Grace
8 months of continuous physical therapy
plica excision/ shaving 6-10-02
5 months of agressive physical therapy
modified Fulkerson and lateral release 5-13-03
currently in limbo

Offline AC

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #9 on: September 01, 2002, 09:24:52 PM »
Rhea,

Does this mean you don't have PFS or do you think you have both that and RA?  Are you still going to see Dr. Fowler?

Good Luck,

AC
Lateral Release along with patella cleanup and bone spur shaving - Early September 2002 - Had a blood clot (DVT) as a complication.
TTT, Scope, and LR in mid June 2003.

Offline rhea

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #10 on: September 01, 2002, 11:42:38 PM »
Hi Helen, Grace, and AC

Last night this whole thing hit.  I had a bad night, depressing...  but Im doing well today and am adjusting the best I can.  At least now I am able to acknowledge my other pains, and know why they are there.

AC: You dang well bet Im going to see Dr. Fowler.  I know there is something else other than JRA in my knees.  My knee caps do maltrack.  I feel them do it.  The only brace that has helped is the corrective PFS brace.  The pain in my knees is different and far more severe than the pain caused by my JRA.  Im certain that there is something else going on there, and I hope that Dr. Fowler also thinks so, regardless of the x-rays and mri.  

Helen: Im letting my parents "run there course" so to speak...  We are all going through the 5 stages of grief.  My future is so uncertain, and its so hard to keep hope.  But we'll all get through this.  What doesn't kill us, will make us stronger and closer.  Thank you for your parents view.  I know my parents are still feeling very very guilty, and that guilt will probably always be there, but hopefully they'll realize its not there fault.  You're suppose to be able to listen to what your dr says, and thats what they were doing.

Grace: Hey Grace.  Thanks for your encouragement.  I don't officialy have a diagnosis from a Dr, but this occupational therapist works with people with arthritis ever day.  She knows RA when she sees it.  Now I've gotta try to find a rheumatologist....  And than come all of these rounds of drugs..  I don't know how Im going to be able to tackle this, but I'll make it.  I hope you get your PT thing worked out Grace.  Maybe your OS will straighten up and fly right for you.

Thank you again everyone.  You are all so supportive and understanding.  It means an awful lot to me.

Take care everyone

(((hugs))) n' healing

rhea
7 yrs of knee troubles (maltracking, maybe plica).  
Finally found wonderful OS(#4)!
Diagnostic scope+biopsy schduled for sept 23,2003  
HMS/EDS III
Chronic joint pain,subluxations,microtraumas...

Helen_uk

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #11 on: September 01, 2002, 11:51:14 PM »
Cheer up my little friend the parent bit can be hard to live with my mum just cant cope with my disability and when I was first diagaonosed she thought that evryone was balming her which of course they werent and I think she feels guilty although she wont talk about any of it and of course I dont blame her its just the way it is.
You will be fine and find ways to cope and I amsure they will come to terms with it all and you will find ways to live your life to the full just differently.
Today has been another bad day for me so roll on bedtime.
H xxx

Offline Helen

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #12 on: September 02, 2002, 03:07:00 AM »
Hey Rhea

How are you doing tonight? Is it night there? I get very confused with time differences  ??? Its probably time I was in bed but I wont sleep anyway, so why bother?!

Your parents are undoubtably feeling guilty right now, together with helplessness, frustration, anger and a multitude of other emotions that they will deal with in time. When my daughter was a tiny 5 year old she was diagnosed with epilepsy and I experienced all the emotions that parents do when in this kind of situation. The point is they were my problem. My daughter was the ONLY issue then and I babied her the way your parents are now. All you need to be concerned with is coping with and adjusting to your condition. Things do work out. After watching her stop breathing and go blue several times, we finally got a great paediatrician who accurately diagnosed her and started her on treatment. She hasnt had a seizure for 2 years!  :)
There is light!!
Helen
04/07/02 RL - patella tendon realignment, LR and meniscus trimmed. RSD set up home shortly afterwards....typical.

Offline rhea

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #13 on: September 02, 2002, 09:18:35 PM »
Hi Helen, and Helen UK
Im having a better day today.  My wrists, fingers, and right ankle hurt, but at least I know why they hurt.  My knees have been pretty good today and yesterday.  I guess they have decided that I have had enough on my plate.  

Helen UK, I hope you are having a better day today!  What is the weather like in your part of the world?  Do you get lovely brightly coloured fall leaves?  

Helen I am glad your little girl is seizure free!  I hope she remains that way for the rest of her life.  Thank you for helping me understand what my parents are going through.  I feel guilty having put them through all of this, but than this is not something I chose to do.  When the day comes that they need my help, I will pay them back.

Bye bye for now everyone

(((hugs))) n' healing

rhea
7 yrs of knee troubles (maltracking, maybe plica).  
Finally found wonderful OS(#4)!
Diagnostic scope+biopsy schduled for sept 23,2003  
HMS/EDS III
Chronic joint pain,subluxations,microtraumas...

Offline Helen

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #14 on: September 02, 2002, 09:38:19 PM »
Rhea, you shouldnt feel guilty about anything. The point in my last post was to make you realise that your parents want to be there for you and will deal with things in their own way. I just wanted you to understand why they are babying you and treating you like glass. When I was in that situation I felt guilty and angry, but never resentful towards my daughter.

Im glad you're feeling better today.
Helen
04/07/02 RL - patella tendon realignment, LR and meniscus trimmed. RSD set up home shortly afterwards....typical.















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