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Author Topic: can't do this anymore...  (Read 5154 times)

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Offline KatieO

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Re: can't do this anymore...
« Reply #15 on: June 25, 2006, 04:51:52 PM »
I second every word that Lezlee said. Pain management centers can offer a wealth of help. I have a pain management therapist who has been such a blessing in my life. There is a lot to cope with when saddled with chronic pain. And comparing is never useful. There is always someone worse off and better off, but your pain is your own and it is lousy. The comparing only helps in that you know that there is someone out there who understands, and that is worth a lot. Sadly, Lezlee, I would also consider a "4" day a good day. I hope my surgery works...
KatieO
5/98 twisting injury
10/98 ACL partial tear repair/ and RSD
10/01 ACL reconstruction w/allograft
7/03 LR
1/06 diagnosed with patella baja
7/5 open knee surgery for IPCS
Life shrinks or expands in proportion to one's courage...Anais Nin

Offline sadface

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Re: can't do this anymore...
« Reply #16 on: June 25, 2006, 09:15:55 PM »
Hello again!

Thank you for your advice Lezlee!I don't think I'm quite there yet luckily, but I have a feeling I might be soon!
At the moment there is days like today where I have minimal pain and others that its just too much...Its not always the same!(But hen saying that I dont exercise any more..and I would love to!!!!)

Like yesterday I went to the zoo with a friend..We were on our feet for about 3 hours...Later that evening I was in agony!!!

Hopefully the OS on Tuesday will clear things up for me!!!I'll keep you posted!

Thanks again! :)

Offline KatieO

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Re: can't do this anymore...
« Reply #17 on: June 25, 2006, 09:22:00 PM »
I find it common that the pain level, for me, does vary. Sometimes I can name why and sometimes not. And, like you, I limit what I do. I limit almost everything. If I did a quarter of what I used to do, then I would really hurt.
But this is all premature for you. You are just gathering information for Tuesday's appointment. Give all the details you can.
Good luck!!!
KatieO
5/98 twisting injury
10/98 ACL partial tear repair/ and RSD
10/01 ACL reconstruction w/allograft
7/03 LR
1/06 diagnosed with patella baja
7/5 open knee surgery for IPCS
Life shrinks or expands in proportion to one's courage...Anais Nin

Offline sadface

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Re: can't do this anymore...
« Reply #18 on: June 26, 2006, 06:51:43 PM »
Hey again!

And thank you for you support!I was thinking ofmy appointment tomorrow and was wondering if you have any ideas of good questions!I wont be able to think once I'm in there so I need to do some pre-thinking! ::)hihi

I just him to take the time and find out what is wrong and tell me: You've got to do this, this and this!Whatever it is!Even if its more surgery!I need to have a plan!A goal and then I can motivate myself to get there!Cause at the moment I dont really know what to do!Any idea?

Also...Physio told me to do heel slides lying down...But the knee I had the LR and menisectomy clicks everytime in 2 specific spots!Its always the same!One is on the right hand side of the kneecap  but low and the other on outside of the kneecap on the innerside!I dont know wether I should continue doing the exercise..It feels a bit weird!

Thank you once more!
M :)

Offline KatieO

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Re: can't do this anymore...
« Reply #19 on: June 26, 2006, 07:11:34 PM »
Organizing is my specialty! I love to organize. It makes me happy. Saying that, sure, let me give you the outline of what I used and see if that helps you to frame your questions. You definitely want to write things down ahead of time. All heads go empty as soon as you walk in a doctor's office. Is anyone going with you? I find it invaluable both for moral support as well as someone I can talk to after and ask what THEY heard (esp since I might be emotional).
So here is what I wrote:

1) a general statement about pain level, description of pain, the impact on my life, and my goal for the outcome (oh, this sounds so like a college essay!!!)

2) timeline or history: injuries, surgeries (who, where, what, when), major diagnostic work

3)Treatments and practices: rounds of PT, acupuncture, drugs taken, nerve blocks, yoga, pilates, etc.

4) Then a section I called "What makes my knee feel better." (short list), basically, ice and elevate

5) Then, What makes it worse (long detailed list), including walking down hills, specific things in pilates class, sitting on one position (definitely mention the PT exercise or anything else you can think of)

6) I stuck in "Impacts" all of work, cleaning, cooking, all exercise.....

7) "What I want" This was a kneegeek suggestion and i went wild: I want to be pain-free!, to be off pain meds, to be able to drive, take long walks, work in the garden... tons of things!

I had a separate page (the above was two pages and I had one copy for the doctor; gave it to the receptionist ahead of time; some docs really look at it and some don't, but it organized my thinking)
for all medications I am currently taking and doses (they always ask this and it is hard to reconstruct on the spot) and all allergies.

So.... you want all the detail you can muster. Doctors like to work out puzzles, so give him all the puzzle pieces to put together. Quirky details are great. One of my problems is that I am so used to hiding my pain that it no longer shows. I appear too calm and able, but really, I can't stand it anymore. I had to pump myself up that it was ok to be emotional and even cry. My boyfriend often has to tell the doctor I am not kidding when I say I am in pain all the time.

You may have to have some diagnostic work done before he will tell you much, which stalls knowing what the plan will be, and that can be really hard. I kinda freak if I walk out of a big appointment and don't know anything new. I don't think I can prepare myself for that. These appointments can be emotional roller coasters and that is just how it is. That is why the geeks are here for support. It is ok to be brave and it is ok to be emotional. Currently, I am counting down the 9 days until the surgery that I am counting on turning my life around and I am not calm, cool and collected. I am bouncing off the walls! Hence, writing you a nice organizing email like this is helping me get through MY day.

Best of luck!!! You'll let us know??!!
KatieO
5/98 twisting injury
10/98 ACL partial tear repair/ and RSD
10/01 ACL reconstruction w/allograft
7/03 LR
1/06 diagnosed with patella baja
7/5 open knee surgery for IPCS
Life shrinks or expands in proportion to one's courage...Anais Nin

Offline sadface

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Re: can't do this anymore...
« Reply #20 on: June 26, 2006, 07:26:17 PM »
Hey!!!
Thank you so much!!!!Unfortunately I'm going on my own!Unless my boyfriend can make it but its in the morning so sont know if I can!Buy anyway....

I need to start writing everything down!I will let you konw how it went as soon as I get back!I know I might not get answers tomorrow and it bugs me as I'm going back to Greece for 2 months so any MRIs or anything will have to wait till September!But still it is a step ahead...Plus swimming everyday in Greece will help!I am positive!But even sending me fomr tests is a good plan!!!! :)That woul be enough for me now...

Thank you again!Find things to do to distract you and make time fly!!!Watch lots of movies!I usually watch friends if I want to take my mind off somthing!Read a book!Do lots of things!it will make a big difference than just sit and wait!!!

I can't to wait to go home next week!Just want to go now!hehe.I will be getting engaged this summer so you can imagine how much I just want to go back now!!!lol...Time goes soooo slowly when you are waiting for something to happen!!!!!


Oh well!I'll write to you in the morning when I come back!I booked my appointmnet at 1020!!The 1st they had available!To get it over and done with!!

M

Offline ozzybug

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Re: can't do this anymore...
« Reply #21 on: June 26, 2006, 08:12:45 PM »
M-
Katie is 100% right about writing down your thoughts, information & questions before going to the doctor.  I started doing that so I wouldn't forget anything.  It's very useful.  As he answers your questions and addresses your concerns, you can jot notes down on your copy so you won't forget what he says, and can also do research on-line about any information he gives you.  I have found that the more informed I am, the better I can help myself and help the doctors to help me.

I have even kept a pain journal before so that when I was having a really bad day, I could at least look back through my journal and read about the good days I've had.  It kind of helps me to realize that I'm not having all "bad" days.  It doesn't always help, but at this point, anything that helps is worth a try.

Katie- I too hope your surgery is a success.  And it is sad when we feel that a pain level of 4 is a good day.  My life has drastically changed in the past 2-3 years and some days I long to be doing some of the things I used to do.  I can say that my needlepoint skills have improved though!

Have a great day ladies, and please do keep us posted M!

Lezlee
Rt knee:Meniscal repair 8/03: Repair prev. meniscus repair 10/03;Chondro shave, scar tissue removal 12/03;LR,debridement chondro & scar tissue 04/02/04;TTT done 09/14/04;VMO advancement 04/2005- Does it ever end?

Offline KatieO

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Re: can't do this anymore...
« Reply #22 on: June 26, 2006, 08:23:34 PM »
M,
If you can possibly get your boyfriend to go with you, try for that. I find that it just makes a huge difference. I had one big appointment where it was an hour and a half drive. My boyfriend was driving so I could sit in the backseat and ice, stretch my leg out. I had a meditation tape on and was imagining all my friends standing a circle around me, holding hands, giving me good energy. It was very powerful. Poor Don looked in his rear view mirror and saw tears streaming down my cheeks and didn't know if I was upset. I was actually scared but filled with loving energy.
It is good that you have anticipated that you might not have full answers at this one visit. One's expectations matter a lot. I have very high expectations for my surgery, but I have thought about that a lot, and while I want to be pain free and dancing, I know I would accept having less pain and fewer limitations. Anything would be better.
I am cleaning my apartment and reading... maybe I should head out and get a movie. And I keep checking in with kneegeeks! This is my lifeline!
Lezlee, what is your life like? Do you want to talk about it? What kind of limitations do you live with? I actually had to quit my job in February and have no idea what kind of work I could handle if my knee doesn't improve. Just a tad scary. I got divorced 3 years ago, my girls are grown, but I do have to support myself!
We all take care of each other!
M, so you are getting engaged! Congratulations!!!! Tomorrow is the appointment. What day do you leave for Greece? A long time ago I was in Athens and Santorini. I was pregnant with my daughter who is now 21!! My brother lives in Venice and goes to Santorini every July. With my knee, I can't sit long enough to travel anywhere, so I dont' get to visit him. BUT if my knee really improves....!!!
Love,
KatieO
5/98 twisting injury
10/98 ACL partial tear repair/ and RSD
10/01 ACL reconstruction w/allograft
7/03 LR
1/06 diagnosed with patella baja
7/5 open knee surgery for IPCS
Life shrinks or expands in proportion to one's courage...Anais Nin

Offline ozzybug

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Re: can't do this anymore...
« Reply #23 on: June 26, 2006, 08:44:16 PM »
Katie- I'll im you about all my stuff- and thank you so much for asking.

M- We really want to know how that appt. goes.  Please let us know....and also- how exciting to be able to visit Greece!

Lezlee
Rt knee:Meniscal repair 8/03: Repair prev. meniscus repair 10/03;Chondro shave, scar tissue removal 12/03;LR,debridement chondro & scar tissue 04/02/04;TTT done 09/14/04;VMO advancement 04/2005- Does it ever end?

Offline sadface

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Re: can't do this anymore...
« Reply #24 on: June 26, 2006, 09:18:49 PM »
Hey Katie and Lezlee!

I will definately keep you posted!I'm going back to Greece next Monday!Hopefully!I hate flying so in a way it ruins the excitment!!!heheBut still!

Santorini is wonderful!!But not if you have bad knees!!!Hopefully you'll be able to visit your brother soon!!!! ;)

M

Offline KatieO

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Re: can't do this anymore...
« Reply #25 on: June 26, 2006, 10:32:57 PM »
M,
Can you read on the plane? If you have a really engrossing book, maybe you won't mind the flight. And you do end up in Greece, so that is a good thing! My visit to Santorini was before knee problems, though traveling through early pregnancy was not a pleasure! My brother has a friend in Santorini who owned a place called Thanos Villas. We stayed in one of those cave-like apartments for a week or so, overlooking the caldera. Not bad!
We'll watch for your OS report tomorrow!
love,
KatieO
5/98 twisting injury
10/98 ACL partial tear repair/ and RSD
10/01 ACL reconstruction w/allograft
7/03 LR
1/06 diagnosed with patella baja
7/5 open knee surgery for IPCS
Life shrinks or expands in proportion to one's courage...Anais Nin

Offline sadface

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Re: can't do this anymore...
« Reply #26 on: June 27, 2006, 01:58:18 PM »
Hey!

Went to the doctor!It was a really nice guy,who listened to everything I said....Now...

Basically he said I've had too much done on my knee and he wouldnt operate on it again.He said that obviously I can't do professional dancing but he cant see why I shouldnt be able to do some sports.He said the same thing that physio said to me..He said my mind has associated certain things with pain...So I get pain...and I should try and built myself up to exercise!He said I will always have some discomfort but it shouldnt' be a big problem...

So in a way I'm happy cause I know that exercising even if painful at times is not doing any harm!

So I will go with that till the end of the summer and hopefully I'll be better by then!

Now..I'm happy cause its the best I was expecting to hear although I'm not sure if he said all that cause I've done 2 surgeries in Greece and he sees i've still got pain and don't really want to mess with it any more!

But its good for now! :)

I'm happy!hihi

M

Offline KatieO

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Re: can't do this anymore...
« Reply #27 on: June 27, 2006, 02:14:54 PM »
M,
That's a great send off for the summer!!! You may want to check back in with him in the fall if things aren't much better but in the mean time, enjoy all the swimming and exercise that you can! If you can't dance on the stage, maybe you can just dance for fun. And if he does think that this may somewhat be in the chronic pain syndrome area, I highly recommend taking the time to slow down your body with meditation, yoga, that kind of thing. It can have a wonderful impact on pain, or not! In any case, it is very good for you!
Get packing for Greece!!!
KatieO
5/98 twisting injury
10/98 ACL partial tear repair/ and RSD
10/01 ACL reconstruction w/allograft
7/03 LR
1/06 diagnosed with patella baja
7/5 open knee surgery for IPCS
Life shrinks or expands in proportion to one's courage...Anais Nin

knee deep in Goo

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Re: can't do this anymore...
« Reply #28 on: June 29, 2006, 01:37:12 AM »
I have travel envy now  :)  Have a great vacation.  All those hot greek men..