Do you live in worry

SandyRI · 02-26-2011, 09:16 PM

Dear Pete,

Thanks for your reply....

But I must work to because I need the money and benefits for my family. Fulltime. And I have RSD and will need to deal with WC approvals/denials, lawyers, and all that related BS for the rest of my life. I will never be FREE of the need for ketamine infusions or some other treatment to keep me going so that I can work. And I need it on an on going basis, every month.

There is no lawsuit for me to win that will garner any cash or benefits for my family. Ever. None of the disability policies I purchased like a responsible adult will pay me a dime because I was hurt on the job. I have no time to volunteer more than I already do (I'm on the board of 2 organizations already).

Please don't try to make me feel bad because I have shared with others that I am scared of my RSD and my pain. I can certainly appreciate where you are coming from, and I'm happy that you have found balance in your life. But some of us are not as fortunate, and have chosen to share that with our friends.

Peace Sandy

Quote:

Originally Posted by AintSoBad

I choose.
To be worried, or to be happy and what? Free?

Yea.

I have no reason to worry, BIG DEAL, I got rsd, four discs, TOS, and more but I won't go on, I must say though , that all these give me reason to LOOK AHEAD! AND BE POSITIVE!

While I won't lie, I cannot do so everyday. Today, however is one I can!
Yesterday, was not, I was face down, but, still looking forward to a 'New Day' a 'New Life"~!

WE can't get down on ourselves because of pain.
We're not broken,
We're Beautifully Broken!

So MANY have it worse.

When my Dr or his nurses ask me about my worse pain, my least pain, or my everyday pain,
I can only say this.
Lowest, about 4.
Medial, about 7.
Highest, (and they tell me, on a scale from one to ten, many tell them much Higher than 10! I think, how can anyone be so uncaring? Always, someone has it MUCH WORSE than us! I give them a 9.5)
I'm , after 27 years of this, and other things, have difficulty thinking anyone with only rsd, could be SO selfish, even after seeing the suffering on TV, that they could rate themselves a 10+!

I don't know, who do they think they are, but I'd suggest, that they count their blessings!
That's what I try to do.
Even at my lowest.

Get out and help a church/synagogue/charity!!!!!

You'll feel SO much better about yourself!

Oh well, some will never get it.

Peace on all,
w/love,

Pete

daniella · 02-27-2011, 01:51 AM

I have always felt from my unreal about of therapy that one can't always shut off how they feel. Yes they can work on ways to cope with things better or be more proactive in life but a feeling is a feeling. No right or wrong ones. I also think some people have better outlooks in life then others. I am the first to say I don't have a good one.
Keep smilin I think you hit something that they were teaching me at the clinic I went to is learning to create a new life with rsd and find joy even though it is hard. We may not be able to do some things but can do others. It is finding that I guess. I agree this is such a warm family here.
Sandy I give you so much credit. Having to work through this condition must be so hard. You have a lot on your plate and you are a strong person. I am scared too. I am just going to try to figure a way to live in a calmer fearful state.
Aintsobad I think you have the outlook of being positive that I don't have. I know there are people worse and I feel for them truly. I think regardless though of someone else being worse or better this condition impacts ones life so bad. I often say things can be worse but it does not take away from the suffer now.

peppermintpatty · 02-28-2011, 02:22 PM

I suffered from anxiety before my injury, but it became significantly worse afterwards (I've actually been diagnosed with PTSD as a result of it).

Of everything I've done, the therapy definitely has helped the most, along with really becoming proactive in my care. It's still a struggle, though, I won't lie. I have medication I can take for panic attacks, but the techniques I've learned are usually successful in helping me to calm down.

I've also modified my actions, i.e. - I don't go into crowded stores, try to keep my bedroom very serene/uncrowded, those types of things.

I suffer from the "vicious cycle" that Dr. Smith referred to. I've been unable to beat it, but accepting it DOES help me somewhat in that I know I have a good day coming around the corner.

(And if you wonder why I didn't answer before, it's because I couldn't have answered this cheerfully when I first read your post the other day. Trust me, I'm NOT this positive all the time, just keeping it real!

)

keep smilin · 02-28-2011, 03:51 PM

Quote:

Originally Posted by peppermintpatty

I suffered from anxiety before my injury, but it became significantly worse afterwards (I've actually been diagnosed with PTSD as a result of it).

Of everything I've done, the therapy definitely has helped the most, along with really becoming proactive in my care. It's still a struggle, though, I won't lie. I have medication I can take for panic attacks, but the techniques I've learned are usually successful in helping me to calm down.

I've also modified my actions, i.e. - I don't go into crowded stores, try to keep my bedroom very serene/uncrowded, those types of things.

I suffer from the "vicious cycle" that Dr. Smith referred to. I've been unable to beat it, but accepting it DOES help me somewhat in that I know I have a good day coming around the corner.

(And if you wonder why I didn't answer before, it's because I couldn't have answered this cheerfully when I first read your post the other day. Trust me, I'm NOT this positive all the time, just keeping it real!

)

Acceptance of our illness means taking ownership ...including every each and step of it's spreading... So please, try not to be too hard on yourself... I can hear my sweet departed Mom saying that to me..So, this advice holds a bunch of merit gently wrapped up in a beautiful package topped with a loving bow!!!

Hugz, KS

lindatall2 · 02-28-2011, 04:24 PM

I'm newly diagnosed and just beginning the nerve blocks (this Friday). None of the pain, nerve meds have worked so it is scary. I live by myself, no money saved and I must work ( I do have disability if I chose to use it I guess). I just recently started doing Jon Zabat Kimm's tapes on minduflness and pain. I find breathing and being in the moment (THE MOST i CAN BE...), helps just a little. I catastrophize alot!! And in the tapes he does mention that labelling it pain...could make it hurt more..and has some suggestions for other names...but he's very kind about it, doesn't make any grand statement about what works or doesn't.

I have also found I'm burning my friends out...so probably need to do more sharing on this forum.

I also have been working with my spiritual minister alot on this..and the prayers plus her belief in healing (heal the mind and body will follow ) are very inspiring to me. I also read a lot of positive, inspirational stories...just have to take some control back and create a new life with CRPS..grieve the old, but find some purpose in the pain.

Hugs for us all.

Linda

ali12 · 02-28-2011, 06:44 PM

I too live in fear. I think it's normal for anyone dealing with RSD and any other illness.

My main fears are around making things worse pain wise. If I plan to go shopping or out with friends, I am always thinking about what could make it worse (walking, air, stress, transport etc) and always end up getting into a state because of it. I try not to get stressed too much and try and allow myself to have fun but it's SOO hard! I know if I go out one day, for a few days afterwards I can be laid in bed in severe pain because of it. I've got used to things a bit more now (had RSD nearly 4 years) and have a theory that for every day I play, I have to set aside a day to pay and it's soo true!

I honestly don't know what you can do to try and eliminate the fear. Like you, I am under a Psychologist's care but I don't think they help that much. I don't think anyone can truly understand RSD unless they have experienced it. My PM Doctor is sending me onto a 3 week course for people with chronic pain. It is supposed to help them think about life in a more positive way, has Psychologist and Doctors support and is supposed to help you 'cope' with the reality of a chronic illness better. I'm hoping it'll help but theres a long waiting list for it.

Take care, Daniella. Sorry I couldn't help, just know you aren't alone!

Alison

SandyRI · 02-28-2011, 09:01 PM

I needed to take a year off from my job when my RSD first spread into the occipital region of my head - I couldn't deal with the sudden onset of severe daily migraines. I can truly emphasize with how you feel. My first message above came off a bit snotty, when in truth, I am blessed. after many court battles and with the very significant assistance of my husband and parents and siblings, I have had 34 ketamine infusions since last April 19th. I was able to return to work in June on a FT basis.

If WC had had their way, I would still be home, unemployed, with a combined cost of wages, meds and other less effective treatments in excess of the current cost of the ketamine. They (The Hartford, in my case) are truly evil and that is what is totally unnerving and very, very scary. My approval runs out in early May, and back to court we go... I am 50, and I can't imagine how awful this is going to be when I am 70 or 75...ugh.

Mindfulness helped me a lot. If you google it you will websites at UMass and in California that have recordings you can listen to.

don't ever give up trying to get better... the best of luck to you. Xoxo Sandy

Quote:

Originally Posted by lindatall2

I'm newly diagnosed and just beginning the nerve blocks (this Friday). None of the pain, nerve meds have worked so it is scary. I live by myself, no money saved and I must work ( I do have disability if I chose to use it I guess). I just recently started doing Jon Zabat Kimm's tapes on minduflness and pain. I find breathing and being in the moment (THE MOST i CAN BE...), helps just a little. I catastrophize alot!! And in the tapes he does mention that labelling it pain...could make it hurt more..and has some suggestions for other names...but he's very kind about it, doesn't make any grand statement about what works or doesn't.

I have also found I'm burning my friends out...so probably need to do more sharing on this forum.

I also have been working with my spiritual minister alot on this..and the prayers plus her belief in healing (heal the mind and body will follow ) are very inspiring to me. I also read a lot of positive, inspirational stories...just have to take some control back and create a new life with CRPS..grieve the old, but find some purpose in the pain.

Hugs for us all.

Linda

Imahotep · 03-01-2011, 11:35 AM

Quote:

Originally Posted by Dr. Smith

Hi daniella,
It's exacerbating your health in a lot of ways you may or may not be aware of - It's gotta stop. Easier said than done? Indubitably. There are facets you cannot control (or cannot contol easily) and there are facets you can control, and it's on these that you should focus. Help is out there, whether from your therapist, support group, support network, or out on the web. Help, yes, but no-one can do it for you - you must do it for yourself and for those who care about you. I can't tell you exactly what to do or what will work for you; I can tell you what usually works for me:
http://tinyurl.com/2c642oa

There is a lot of excellent advice here. I do reasonably well following it except for being able to supress the guilt of not contributing more than I do and in being able to laugh more. For a long time I was even snippy with people and this made laughter much more improbable. It can be hard to be in pain and socialize normally especially if you never did a lot of socializing in the first place.

The terror of this disease is just pervasive. There's always the thought in the back of your mind that you didn't really do anything to get here and the slightest slip can cause symptoms to worsen horribly and even permanently.

But we do have to get out there and do as much as humanly possible and stay as active as we can or we'll atrophy away much faster. For me this requires that I find things I enjoy and continue to do the things that I always enjoyed even if I can't do them well. Hobbies are critical even if it's just reading. If holding a book is hard then read books on the net. As the person in the link said; modify. Make the adjustments necessary to continue to lead as normal a life as possible.

For me this is mostly about trying not to dwell on the dangers. Being as careful as possible tends to help this a little.

Learn your triggers and avoid stress.

Imahotep · 03-01-2011, 11:45 AM

Quote:

Originally Posted by daniella

I have always felt from my unreal about of therapy that one can't always shut off how they feel. Yes they can work on ways to cope with things better or be more proactive in life but a feeling is a feeling. No right or wrong ones. I also think some people have better outlooks in life then others. I am the first to say I don't have a good one.
Keep smilin I think you hit something that they were teaching me at the clinic I went to is learning to create a new life with rsd and find joy even though it is hard. We may not be able to do some things but can do others. It is finding that I guess. I agree this is such a warm family here.
Sandy I give you so much credit. Having to work through this condition must be so hard. You have a lot on your plate and you are a strong person. I am scared too. I am just going to try to figure a way to live in a calmer fearful state.
Aintsobad I think you have the outlook of being positive that I don't have. I know there are people worse and I feel for them truly. I think regardless though of someone else being worse or better this condition impacts ones life so bad. I often say things can be worse but it does not take away from the suffer now.

I applaud those who can continue their lives with this thing. I do know how difficult it is to deal with the disease and a normal life.

But there are many things you just can't do any longer or become chores. I had trouble just putting on my work shoes or peeling an orange. Now I buy oranges in a bottle.

Everyone has to adapt and part of adapting is finding things to take the place of what was lost. I doubt this is an easy process for anyone but it's something we all need to do to the best of our ability.

We must laugh in the face of terror. During the blitz of London in WW II people got used to be bombed everyday. They'd picked themselves up and dust off and then go back to carrying on with their lives. The major difference is we have to dust ourselves off just right or we'll be in more pain.

CZZ74 · 03-01-2011, 11:59 AM

Me too Danielle, I feel the same way- hitting year 8. Pain is worse than ever.
Lots of fear anxiety talking to myself all day because of sleep deprivation.
I too sleep only 2-3 hours. It is dreadful.
I am at a loss as far as advice., Just wanted you to know that you are not alone.
It does look like you have received good suggestions. I believe I will try them as well.
.I am so sorry for your pain.
Sincerely cz

Quote:

Originally Posted by daniella

I live in fear,worry,anxiety. I am seeing a psychiatrist,did biofeedback,group therapy,and am going back to individual therapy. I also sleep a max of a few hours at night and that is not a joke even on enough sleep meds for a horse.I can go a few days without any. I know people say that is not possible but I will be up talking to a friend,can tell you a movie I watched,on the computer,etc. I live in fear about my health and worry about everything from environment,air,knocking myself,I could go on. I think because not just with the rsd pain but other health problems that may be connected of course so much has happened. It starts off as a small health problem that seems like nothing to turn into a long lasting painful experience. How does one get past the fears and worry when so much happens? I guess just looking for others experience. Thanks for listening.

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