Hi its been quite awhile since i logged on.  I rupture a tendon in my right ankle and had to have my ankle fused, with 3 screws and washers and bone cement because my bones were so deteriorated. the surgery was in august of 2008 and i couldn't drive for 8 monthsl now i just found out i need a left knee replacement because my bones were destroyed from the effects from too much prednisone. too much prednisone can cause blood flow to stop in a joint and then the bone dies off. so another surgery for me. i don't think i could take another surgery but i have to get it done as soon as i can so my bones can support the metall i hope everyone is doing well. hope to log in again soon.

Hi Michele, Glad to hear you are better.  i am still new to the web site and need to get used to it.  Please tell your husband that the Wii is awesome.  with my health problems i couldn't participate in the one sport i loved and that was bowling until we got the Wii.  it takes the same amount of mental concentration as the real game but no strain on the back.  its great to play and see who get the highest scores.  and when you are playing you have the same sounds and see other bowlers playing in other lanes.  it had been years since i could play and my husband and girls could see how depressed i was when i went with them to a bowling alley and my husband was like we are getting one so i could play too.  there are so many other things- carnival games (dunk tank-really hard; bottle throw; clown throw; water balloon; ring toss and so many more) they even have a fitness game for each player to see how they do in different tasks and at the end it scores you at what age you played like.  and right now i play at a minimum. i went to the doctor on thursday to see if i could get my cast of my leg (fusion surgery in august) and of course my foot is not totally fused and when he pressed on the area it really hurt.  Now he has me in a cam boot (i call it a frankenstein foot) and ordered a bone growth stimulator to complete the fusion.  Now i have to wait till the week before Christmas to get it off.  I am very upset and discouraged if i will get this and any other supportive equipment off.  i had a cam boot on in early july and was hoping to be able to drive before thanksgiving. its really hard to keep upbeat about this but i really have to try.  Thanks for talking with me, I really enjoy it.  Hope all continues to go well. Joy

Hey I wrote a blog Update if your interested.  It's been a rough week.  I'm glad you're back on I haven't chatted with you in a while.  I was talking to my husband about you and the Wii we talked about.  He was interested in whether someone who had it liked it as much as the hype.  I told him you seemed to be really happy with it and that you said you could play it and get some excercise even on days you needed to sit down and play.  I hope all is well with you!  Michele

Hi Michele,  glad to hear from you.  i hope the doctor finds out what is wrong.  if you can't get the right answers and help from the doctors will you be switching to a new doctor?  I did that with my rheumatologist, pulmonologist, and gastroenterologist.  I felt like i was invisilbe to my other doctors.  no matter how much i told them they did not listen.  a fresh pair of eyes and brain are priceless.  my rheumatologist started from square one and treated me as a patient who just acquired the disease and have been getting the right care with more frequent blood work, new medications and speaks to my other doctors if she has a question because with a consult report things can get omitted.  she is also very well versed in medication and interactions and remembers you and treats you as person.  i was so happy and confident in her care that the stress of not being heard was diminished.  at every office visit with every doctor i give each of them a copy of my medical history and medications list and report to them if there are any changes. 

I hope you get better real soon. keep me posted.  Joy

Thanks for the reply.  I go see the doctor again tomorrow, I don't know if he'll have any answers, but between the fevers I've been running and the chestpain(Pleurasy) and heart palpatations, I'm going nuts.  I think I'm dehydrated too.  I'll probalby just get a referral to the Rheumatologist again.  We'll see.  Glad your back on.  It's nice talking with you. 

Hi.  how are you doing?  this past week has not been that good. it has been very cold outside.  I promised my girls to go out over the weekend and have a day of it, well couldn't do that. but the weather is so cold that with my recent surgery on my foot to fuse it because of a ruptured tendon when i go out i can feel every screw  i my foot and that hurts more than walking on the ruptured tendon. so we did everything in 3 days and the girls get very happy and suprised we went out and did what we  needed. 

after 18 years living with RA and fibro and being angry i decided to live by this motto:DO NOT GIVE UP, LOOK AT YOUR LOVE ONES, REMEMBER HOW MUCH THEY NEED YOU AND YOU NEED THEM.  DO NOT FEEL USELESS, OR YOU ARE GIVING UP IF YOU CAN NOT WORK, IT'S THAT YOUR BODY IS TELLING YOU SLOW DOWN AND ENJOY LIFE AND YOUR FAMILY AND FRIENDS.  WE WHO TAKE CARE OF OTHERS SOMETIMES NEED TO BE TAKEN CARE OF OURSELVES.  REMEMBER YOU ARE NOT GIVING UP ON YOURSELF, YOU ARE LOOKING OUT FOR YOURSELF SO YOU CAN BE WITH YOUR LOVE ONES AND ENJOY EACH OTHER.  DO NOT LET YOUR DISEASE TAKE OVER YOUR LIFE, TRY TO LIVE BETWEEN UP AND DOWNS AND CHERISH THOSE MOMENTS AND REMIND YOUR LOVE ONES TO DO THE SAME.

hi wishing4better,

thanks for adding me as a friend

Pat (cdancer)

Please excuse me - can't believe I forgot to mention the Fibromyalgia! Add that into the mix as well.

'There's a positive in every negative; sometimes you've just got to look really hard to find it!'

I try to live by that motto going on nine years now; have to admit it sometimes difficult to remain positive!

Good Luck and God Bless You All!

Brenda

I know now having lupus SLE myself, that if I push myself now it pushes back even harder.  I won't bore you with my story it's on my profile, you can check it out if you want.  It's very hard, and I tend to beat myself up about it.

Hi there-

Wishing4Better is exactly what 'we're' both doing and hoping for...I have some of the same diagnosis as you. Systemic Lupus, Rheumatoid Arthritis, Sjogrens Syndrome, etc. etc.

I too was a 'workaholic' prior to all of these devastating diseases. I worked 50-60 hours weekly, went to school at night fulltime (3 nights 6pm-11pm), then home by 12:00am rushed to grab a shower jump in bed up at 5am again to start my day over one more time. 

In addition to school at night my son played baseball during the week as well. I tried to schedule my classes on the nights he didn't have ballgames. So therefore, when not in class at night I was there with him at each and every game he played. He doesn't realize it but he is exactly what I live for; what pushed me to 'better' my self with a degree, I set my goals very high but with small ones in between just to acknowledge some sort of accomplishment. I did actually accomplish the job/career I worked for so very long. But within a split second it seems like it was snatched right out from under me because I couldn't perform my responsibilities any longer.

This was my schedule for many many years.

I wonder if somehow by chance? We actually brought some of these things upon ourself by 'pushing' our bodies so much for so long?

Just a thought I thought I'd share with you.

Hope to hear from you soon!

God Bless!