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Author Topic: Saw arthritis lady today.  Jee whiz, my body SUCKS  (Read 15680 times)

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Helen_uk

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #15 on: September 02, 2002, 10:38:59 PM »
I too feel guilty that david and the girls are burdened with me and my disability and yes i realise that is silly because non of us choose our situations or futures.
But sometimes I do feel sorry for them having this dysfunctional mum and wife but that s how it is and I fI was to suggest this to them they would be so upset, I know that really they are very proud and love me lots as do your parents and it is my guess they just want to make the future better and painfree.
Tka ecare
H xxx

Iona_-Uk

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #16 on: September 03, 2002, 12:36:41 AM »
Hey Rhea
so glad for you that you have a diagnosis at last, I am so disgusted at the way that your dr's have tres-ated you and as your lady dr said, this damage is irreversible.

The thing now is too look how to prevent this disease becoming a major life problem for you, you know that I have RA in both wrists predominantly, I have worn the splints and have had very good effects with them, also make sure you take supplements like, omega 3, cod liver oil and the best of the lot, Devils claw, as these have all been helpful to me, however they do take a few months to work so don't get despondant if youdon't see any results immediately.

The other thing is to ensure you get on to a course of anti inflammatory medication and artjrits stopping drugs, as it may be possible to halt the progression of your illness at this stage.

Do keep your chin up though, don't let this get to you,because you knw that you are stronger than it and that you can fight this.

Your parents and us will always be there no matter what so do call on us we are always here and you can moan to us and we can help.

I do think you should consider taking action with regards to your GP, maybe you or your mom could write in and reiterate the findings of the lady dr, an apology is the least you deserve for this.

Love n hugs and thoughts
Iona

Offline ellynno

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #17 on: September 04, 2002, 08:53:04 PM »
Dear Rhea:

My heart goes out to you.

People react to kids and to women! as if all problems are emotional or hormonal or because we're needy or wimpy or maybe "it" will just go away given enough time.

When you hurt, no one else can FEEL that hurt. Pain is very subjective. When you know something is wrong, especially if it's inside, it's hard to convice others how bad it can be.

I know that as a parent, having something happen to your child is hard to face. But also, it's hard if you think you have to keep up your spirits and your parents', too. They will have to learn to deal with it without putting too much pressure on you.

As others have said, it must be a relief to know what is causing you so much trouble.

Wishing you good days!!!!


Offline rhea

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #18 on: September 05, 2002, 05:48:16 AM »
Thank you for your replies Helen, Helen UK, and Ellynno.  I had an absolutely horrid first day at school.  I had two classes in the morning. By the time I got into lunch hour I was feeling horrid. Then came data management (grd 12 uni. math). I had to leave early, I just could not stay any longer. And what scared me was that my fingers weren't working the way they should. After 40 mins of note writing in my last class, my fingers just wouldn't print the numbers or letters anymore.. All I could get were weak scribbles. I got home @ 2pm and was in bed in complete agony (knees, hips, left ankle causing pain that was out of this world) for 5.5 hours. My mom came home at that time and got 20 mg of Toradol in me which took the edge off. Im on crutches this evening. I can't do this... I pulled it off the last 2 yrs, but now the pain is just to intense. All of that walking on those awful cement floors and sitting in those plastic seats is just too much for me. And energy....I have absolutely no energy when I get up in the morning. Getting dressed is a big enough effort, let alone attending my classes. My parents are talking me into dropping math (I have my grd 11 uni. math so I don't need another to graduate) and doing another course at home. I guesss that is my only choice. Im sorry if I sound like I am moaning. I just feel so shocked as to how down hill I've gone. And seeing all of my healthy friends race down the hallways, tie there shoe without a second thought etc... It really made me see just how unwell I am right now! I don't know how Im going to manage this year...

Well thanks for listening everyone. Im sorry if I don't sound very up beat, but Im just so worried about burdening my parents, not being able to finish my year, not knowing how Im going to live an independant life even. Perhaps tomorow will be a brighter day.

For the time being I guess I need some more relaxing with the crazy poodle :D  I hope you  are all doing well. Congrats Grace on your PT victory!  Helen UK, I hope you are feeling better too!

(((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 Liz_-_UK

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #19 on: September 05, 2002, 12:17:12 PM »
Rhea,
It saddens me to hear you say you can't do it. Look how far you have come already! You can do anything you want to - maybe not as quickly as other people but you will get there in the end.
The beginning of term is always a shock to the system - you haven't had to write that much for weeks so it will take some getting used to.
We are all here for you and will support you whatever you decide to do.
Take care,
(((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 #20 on: September 05, 2002, 03:28:02 PM »
Hi Liz,
I've pretty much decided to  drop the math course.  Even if the pain wasn't there, Im still to tired to grasp mathmatical concepts.  My OT says Im in the middle of a full blown flare up that's in its 7th year.  She said all of my energy is going to destroying my joints and organs.  She said that rest is the number one thing right now.  Im glad she told me that b/c at least I don't feel lazy dropping that class.  And Im still pulling 3/4 which is pretty good considering that Im worse than ever this year compared to the last 2 yrs.  Im doing one online course so I only have to go to 2 classes.

Thank you Liz for your encouragement.  It helps so much to have this board.  The only people who truely understand chronic pain, are those who have had it.  That's why this board is such a help, so many people, sadly, who understand.  

Thank you again Liz.  I hope you are feeling okay and making it through your days reasonably well.

(((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 Liz_-_UK

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #21 on: September 05, 2002, 05:34:06 PM »
Make sure you rest then, sweetie!
I have never been able to grasp mathematical concepts when i'm at my best so i admire you for doing it for so long.
I admire you for coping so well too - i would be tempted to just go to bed and stay there.
Stay strong, and let me know if i can help.
(((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 Helen

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #22 on: September 05, 2002, 06:30:33 PM »
Dont give up Rhea. Tomorrow is another day. Once you are on the right meds and your condition is being managed as it should have been for the past few years things will start to get easier. In the mean time do what you can, leave what you cant and concentrate on looking after number 1.

As for school, I know its probably important to you, but at the moment your health takes priority. You can always go back to school when things are easier, so dont worry too much about it for now. I went to uni aged 27, married with 3 kids in tow and finished up with a really good science degree, so its never too late. Is there no way you could use a dictaphone or laptop to make classes easier? Or maybe arrange to photo copy your friends notes.

I hope tomorrow is a better day.
Helen
04/07/02 RL - patella tendon realignment, LR and meniscus trimmed. RSD set up home shortly afterwards....typical.

Stacey

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #23 on: September 05, 2002, 06:53:48 PM »
Hey Rhea
Some suggestions for school.  Go to the guidance office and explain everythign to them.  They will probbaly be able to arrange a 'note taker'.  Soemone woh has a good attendance record and is doing well in the course so you know the notes are taken well.  Also ask about getting another chair to sit in.  I know at our school soem of the teachers would give up their chair for the class period so someone could sit their if they needed it.  If typing is easier then writing ask if the school has one you can use during school hours and print your notes out at the end of the day or most classrooms (At least at my school) have coputers in them with a wordprocessor that you could type your notes up.  If your having trouble getting between classes on time (That was a problem for me near the end) ask to be let go 5 m inuts early.  That is usually dead time in class anyways.  Guidance willl help you make your time in school a lot easier and I dont know about anyone else but if/ when you get into universuity/college i found it was so much easier to get around and so much more accomidating (Parkign spots, note taking, special exam times, online courses, not having to take a full class load, helping you getting materials to work for you etc..)  Believe me I know its hard and right now i am concerned about going back to school on monday for many reasons but i just realize if i didnt go to school i wouldnt have the great friends i have made that help me out a great deal while at school from taking notes if im not their to just driving me home if i dont feel i can.  I know things hurt just ask yourself who is in charge the pain or you.   :) Feel free to email or message me (MSN or ICQ) anytime.  And good luck with the new OS i think he is in a very understaning mood lately.  He just had surgery himself last tuesday on his ankle and for hte first time ever I got pain medications out of him lol

Helen_uk

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #24 on: September 05, 2002, 07:10:16 PM »
Hi rhea
Hope by the time you read this you are feeling a bit better.
RA flare ups are dreadful and sometimes you just have to give into them.
I have learnt that when I am feeling off I give in and then I am not too bad the next day but if I push things then I get a flare up and sometimes am laid up for several weeks.
Have you considered having a flu jab because if I were to get flu I would be so bad that they insist on it :-/Since I have been having the jab I have been much better.
Heat cushions help me and sun beds in the winter.
Keep chirpy there are alot of people gunning for you.
You are a special girl and if my girls turn out like you I will be very proud.
:-*H xxx

Offline rhea

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #25 on: September 06, 2002, 06:22:31 AM »
Thank you Liz, Helen, Stacey, and Helen UK for your encouragement and suggestions.  Typing has been easier in the past, but now that my wrists and fingers are hurting even that is more of a challenge.  The only class I really have notes in since I dropped math is writer's craft.   My english teacher is awesome though, and I think he'll understand.  Im going to ask if it would be possible to have a copy of his notes.  Or I could just photocopy a friends.  

My wrists and fingers have been sore and swollen.  I've never paid attention to my other joints besides my knees b/c they don't hurt as much as my knees do.  But now that I am more aware Im more tuned into these changes and pains.  My occupational therapist comes tomorow.  I'll let everyone know what happens on that appt.

Stacey,  Im glad to hear you say Dr. Fowler is in a very understanding mood lately.  My appt is at 10:15.  If the wait is 2 hours, that puts us into lunch....so maybe I'll see him after lunch at 1pm.  Im not to grumpy about waiting though.  Lord knows I've done it enough with other Drs!!   Whats another few hours!

Helen UK, thank you for the compliments.   :) You know how much I admire your spirits Helen.  I think you have got to be one of the strongest people I have met.  I mean that.  I am feeling a bit better today.  Cutting out the math and having a 3 hour nap in the afternoon instead has helped alot.  I haven't had any flu needles b/c of our family history.  Everyone on both sides of our family has tried them (they were even free to all of ontario for the past 2 yrs) and everyone has ended up being horribly sick for 7 straight months.  I find as long as I take 1500mg of vitamin C and keep guzzling my soy milk (yeh, I know!!!:) ) that I stay pretty healthy.  I hope you are feeling better and that the girls are adjusting well to the new school year.

Liz, thank you too for your compliments!    Thanks for being so kind and helpful!  Do you feel weak in a flare up?  I wake up from a 4 hour nap and try to get a glass of water and its like the distance between my bedroom and the kitchen is 7 miles up a mountain.  I could sleep all day and all night for months at a time!  

Helen, thank you for your encouagement!  I am dropping my math class.  I've got what I need to graduate and get into the college or university that I want, so that is enough.  If I want the math I'll do it in summer school.  But until I get feeling 1/2 normal Im gonna take my long  naps and do what I can, not what my friends can.  I guess Im thinking in a more realistic mind now.  :) Took me long enough eh? ;D

You are all very dear people to me.  Honestly, I do not know how I could have made it this far without everyones support and encouragement.  It helps make me feel less isolated knowing that other people understand.  I have not met any of you face to face, but it feels as if you guys are all close relatives!!  

(((Hugs))) n' healing everyone

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 #26 on: September 07, 2002, 01:06:39 PM »
keep hanging in there rhea.
When I was at school they kept telling me that if I didnt work hared I would never amount to much,well I would love to see those teachers again oneday and say haey look at me the loser.
I was always so wrapped up in my swimming and swam for gb on several occaisions I did reeally well as a police officer, I got a business diploma became skilled in key board skills.Coached and have travelled all over with my swimming.
David and the girls and I have a lovelly home and life syle we arent rich by any stretch of the imagination but we are happy and have a lovelly time togehter.
It depends on how you measure success.
Be it financially socially or happiness.
Oh and by the way one of the teachers who said this to me I once got enormous pleasure in giving him a ticket when I was in the police force for speeding, and it was one of those sweet moments in life when You could get your own back. tee hee. See I have a wee evil side to my nature.
I am in the middle of a flare up and everything seems like climbing a mountain, well to be honest I just want to do nothing because if I get up it really hurts to so things.
My girls a re a big help when I am bad and mum will help me today.
Take care
H xxx

Offline rhea

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #27 on: September 07, 2002, 08:01:24 PM »
Well I had my 2nd visit with my Occupational Therapist!  I've got molded plastic splints for 4 of my fingers.  In just 1 week my left ring finger has progressed from normal to starting to deform as well!  She wrote a report to my GP.  I don't think he can ignore this...  Here is some of the things she said in her letter:

-poor, unsteady gait
-swollen right and left knees
-swollen right and left wrists
-swollen right and  left ankles
-severe pain
-poor appetite
-visual disturbances

The list goes on and on.  It's a 3 pg report.  It should shock some sense into my GP.  

I've gotta go wrist splint shopping today.  The fun just never ends... :-/  Dad has all the quotes for all the stuff I need.

Well my GP appt to try to get a rheumy appt is on the 9th.  And my Dr. Fowler appt (new os) is on the 11th.  Wish me luck!  Mom and Dad are getting angry about this whole thing....  She showed my hands to my GP and asked him if this was arthritis YEARS ago.  And the last OS I saw specializes in joint replacements for people with arthritis.  You'd think he, especially, would investigate this alley.  My mom has even suggested taking legal action, considering all the emotial trauma these guys have put me through....  Let alone all the unreversable damage.  I don't know if we're still in the anger stage or what...but the way these Drs treated me was far from professional.  My GP forced me to go to PT last summer for the 3rd try!  My PT had me doing horribly painful lunges, deep squats, and that god awful "scooping" technique of my PTs...  According to my OT those were the worse possible things that could have been done, and most likely furthered the damgage. GRRRRR    

Well I hope everyone is doing alright.  Making it through your days as best as you can.  Fall is right around the corner.  The trees should be changing colours soon.  Don't you just love the fall colours?

(((Hugs))) n' healing to my kneeguru family

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...

Iona_-Uk

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #28 on: September 07, 2002, 09:20:11 PM »
Hey Rhea

Don't be scared to come and ask me for advice, I've been there remeber!.

Have your parents spoken to your school about your condition, if not please get them to do so as the school maybe able to work out a suitable solution for you like a scribe for examinations and special softer chairs for your lessons, basically anything that will avoid you missing school, while making it as comfirtable as ppossible for you.

I do think you should consider some form of action agianst the dr, you have had to suffer immense pain for 7 years and that is inexcusable and why has it taken so long to get your treatment?, I know I wouldn't be very happy and we did complain to our GP about the way he treated me and by gosh he was sorry.

I know an apology from the dr will never reverse the effects of your condition but the fact of the matter is he has chosen to ignore what seem like very very striking symptoms of JA, someone should have been able to spot this earlier and stop this from happening.

You have the back of the arthritis lady (sorry forgot her title!) and all of us here and of course your family and animals.

Whatever Rhea, you are a stronger person than a lot of us would be in the situation, myself included and I was terrible after I was diagnosed, I cried for about 7 weeks solidly until I though, I am not going to let this stupid thing beat me, with the help of meds, supplements and support I have been major flare up free for nearly 3 years although yes I do get fatigued and achey but nothing to the times it confined me to bed for 2 or 3 weeks and even to hopsital.

You are going to beat this Rhea, I am sure of it and that is my honest, hand on my heart opinion, if anyone can, Rhea can.

Love Iona xxxx

Offline Helen

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Re: Saw arthritis lady today.  Jee whiz, my body S
« Reply #29 on: September 07, 2002, 09:31:13 PM »
Hey Rhea

It sounds like things are begining to come together for you, thanks to the new therapist. Personally I would have been to the solicitors already. I think its scandalous that such a debilitating condition could have been missed for so long in such a young person. Sorry, but it really makes me mad when doctors refuse to listen to their patients and take them seriously. It seems especially bad when the patient is young and female! My niece and her friend recently had a riding accident, where the friend was rushed to hospital with a back injury. This was on Saturday afternoon. They kept her in over the weekend telling her she had bruised her back. On Monday, when things hadnt improved and she was in agony, they xrayed her and found that she had fractured one of the lower vertebrae in her spine. Basically she had broken her back and they left her for over 48 hours in agony and mobile. Fortunately no further damage was done, but it goes to show the attitude towards teenagers.

Anyway, enough ranting!  :D Im sat here avoiding doing my exercises because Ive been at work all day and am very sore. Strangely enough its a playoff between my left 'good' knee and my right. I think the left is jealous of all the sympathy! It sounds like you're dealing with things in a fairly healthy way. Anger isnt always bad. It makes people listen and gets things done.

Hope tomorrow is a good day for you.
Helen
04/07/02 RL - patella tendon realignment, LR and meniscus trimmed. RSD set up home shortly afterwards....typical.