Banner - Hide this banner





Author Topic: FINALLY! Tentative diagnosis!    (Read 9504 times)

0 Members and 1 Guest are viewing this topic.

Offline rhea

  • SuperKNEEgeek
  • *****
  • Posts: 804
  • Liked: 0
  • I think I can, I think I can, I think I can.......
    • Budgie Love!
Re: FINALLY! Tentative diagnosis!  
« Reply #15 on: November 25, 2002, 08:01:10 PM »
LoL, well I am not quite that tall LoL.  I am 5'11, and yes quite skinny.  Lol, speaking of bean poll, thats what my dad has always called me  ;D  

Thanks Heather M, Shazinoz, Sheri, Wriggley, Janet, and Netty for your kind words and support.  Last night I guess I discovered the sweet stench of reality.  I keep waiting for all of these health problems to be resolved "so I can get on with my life".  And well it hit me yesterday night, this is life, Im living it.  From all of the research I've been doing, it doesn't look like there is a whole lot they can do about all of the joint pain as its due to the faulty connective tissues.  So to think that life isn't going to improve as far as my body is concerned, is frightening for me.  I always imagined myself living an independant semi-normal life...and that doesn't look like that is in the cards.  But Im not letting all of this get me down too much.  Im hoping to get an *official* diagnosis from my rheumy, and also Im going to get myself into the local pain clinic.  See what can be done for the pain.  And hey, with my new OS maybe at least the knee situation can be improved.  Boy would I love to loose these crutches and turn the clocks back just even 6 months ago.  

So, here's to living our life one day at a time, and not waiting too much on the doctors and lab tests to dictate life for us.

(((hugs))) everyone!  And all of you on crutches, BE CAREFUL.  Jeeezzzz crutching into the hospital from the snowy parking lot I just about got myself a free trip into the emerg dept.  
Wet crutch tips+ tiled hospital lobby = nasty fall

Take care, and thanks again guys.  Its nice to know so many people are rooting for me.  It really helps me get through the dark days.

rhea          

ps, thanks a bunch Shazinoz for those fabulous links.  
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 Shazinoz

  • SuperKNEEgeek
  • *****
  • Posts: 1029
  • Liked: 0
  • G'Day from Australia
Re: FINALLY! Tentative diagnosis!  
« Reply #16 on: November 26, 2002, 12:17:39 AM »
Rhea,
Even with Marfan's you can still ive an semi-independat life once treatment and management start and get things somewhat under control. Once you start with the right/preventative/checking health checks, medications etc you can still hope for as independant life as possible, you can live on your own etc provided there is someone nearby that can help if things "flare-up" etc. You need a good support system (ie family, friends and medical team) and dare I say it you need to keep a positive outlook on life.

Good luck and here is hoping thigs are getting settled for you.
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 +++

Offline rhea

  • SuperKNEEgeek
  • *****
  • Posts: 804
  • Liked: 0
  • I think I can, I think I can, I think I can.......
    • Budgie Love!
Re: FINALLY! Tentative diagnosis!  
« Reply #17 on: November 26, 2002, 06:13:12 PM »
Thanks Shazinoz, M, and Sue.  If I get this *official* diagnosis, I think that will help me come to terms with the devil Im fighting.  Just to know what I am up against would be a wonderful thing.  Definitly better than "living in limbo".  And guess what I found out!  There is a Marfan syndrome support group right in my city!!  How great is that?  Kind of funny since my city is relatively small at 56 000.  So if this is confirmed, it'd be great to attend that group.

Thanks again 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...

Offline Linda

  • Forum Faithful
  • ****
  • Posts: 346
  • Liked: 0
Re: FINALLY! Tentative diagnosis!  
« Reply #18 on: November 27, 2002, 11:45:17 PM »
Hello Rhea,

Good luck to you! I hope knowing your diagnosis helps you to manage things better. I don't know where you live, but possibly there is some sort of pemanent disability program? I know that here Social Security will cut monthly checks if you can show that you are permanently disabled.

Wishing you the best!
Linda
LR and Chondrplasty 1/22/02, Clean-up, Chondroplasty and biopsy 6/4/02, AC Implant 11/6/02, Micro fracture and adhesion clean up 8/12/03

Offline rhea

  • SuperKNEEgeek
  • *****
  • Posts: 804
  • Liked: 0
  • I think I can, I think I can, I think I can.......
    • Budgie Love!
Re: FINALLY! Tentative diagnosis!  
« Reply #19 on: November 28, 2002, 03:15:16 AM »
Hi Linda,
Thank you for your congrats.  Its funny how much a name helps isn't it?  Like I still have all of these problems, but to actually get a name for it will be wonderful.  I guess thats because it finally opens the door to treatment, support groups, etc, etc.  

I live in Canada, and yes I do believe there is a disability social security thing available.  Thank you for that suggestion.  Im not ready to declare myself permenately disabled...well at least not until I have tried every single known treatment available.  But it is certainly a good thing to keep in mind if things ever come to that.  

I hope you are doing all right and hanging in there.  Thank you again for your goodluck wishes!

(((hugs)))

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 wriggley

  • Regular Poster
  • ***
  • Posts: 102
  • Liked: 0
  • Bad Spellers of the World Untie!
Re: FINALLY! Tentative diagnosis!  
« Reply #20 on: December 02, 2002, 11:13:02 PM »
hi Rhea

A wee peice of advice for you about Social security and benefits.  Linds is right, start looking into all that kind of stuff now IT DOESNT MEAN HAVING TO TAKE IT.  This a voice of experience from someone who left looking into applying for stuff until i actually needed it which as some of you guys know was bloody stupid.  The other thing is being registered disabled isn't a sign of giving up in fact it can be something you can beat docs and civil servents over the head with.  You can always come of the register at a later date.  The other thing is that the extra money can be used to make your life that little bit easier especially if you ever get to the point of wanting some independence because unfortunately everything costs money.  But the important thing to remember is that it doesnt mean you have given

wriggley ;D ;D ;D
Paraplegic(inc. L5) due to a spinal cord bleed along with previous knee and hypermobility problems

Offline rhea

  • SuperKNEEgeek
  • *****
  • Posts: 804
  • Liked: 0
  • I think I can, I think I can, I think I can.......
    • Budgie Love!
Re: FINALLY! Tentative diagnosis!  
« Reply #21 on: December 03, 2002, 05:46:22 AM »
Hi Wriggley,
Thanks for your words of wisdom!  Once we get a firm diagnosis pinned down (within the next 30 days or so) than I will be forced to face the music.  I won't delay in taking action, I certainly don't want to jeporadize anything by waiting to long.  I will get right on it.

Thanks a bunch!

(((hugs)))

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 SueJ.

  • Forum Faithful
  • ****
  • Posts: 172
  • Liked: 0
  • Hello!
Re: FINALLY! Tentative diagnosis!  
« Reply #22 on: December 04, 2002, 06:55:44 PM »
Hi Rhea,
I know I don't write that often but I've always followed your posts, and hopfully finally having a name to your health problems will help everyone to understand what your going through and that it's not in your head!
You've always been so supportive of everyone on this board, we are lucky to have you! Remember we are always here for you!!
I'd love to see a pic of your new hair do! That was a wonderful thing you did!
Sue
TTT left knee May 17, 2002;  Arthroscopy with Lysis of adhesions,  revision of LR and screw removal left knee 10-10-02.















support