Reality has just set in

Well hon, I understand. Tell me are you on antidepressants? If not you might seek some help with a psychiatrist and try cymbalta. It is supposed to help with pain as well as depression.

I know what it feels like to be in pain and nothing helps. Refresh my memory and tell me where you are with your pain meds. I know you have posted before, but I forget your specific case, so you have to remind me please. I am here for you hon. Just keep posting and get it all out. We are here to listen at least. It does help to vent.

God bless you.

Gentle Hugs,

Linda

SJH -

You know it is hard when that type of stuff hits you. I think for a few of us at least it hits the hardest when we are in the most pain, and all we can see is that it's going to get worse.

Pain does suck, I totally agree with you. It's hard to look down the road in your life and not be able to say for sure that your going to be running around a playground with kids and grandkids. It's hard to no be able to be certain that your going to be up during the holidays cooking large meals for families and friends.

Have you ever looked on the back of just about any manufactured product? On the back of most (at least it seems that way) they all say "This product has been shown to cause cancer in lab rats in the state of california". Basically hubby and I have decided to spend as little time in California as possible because we've figured out the truth - the truth is living in California causes cancer. I know this doesn't seem to fit in anywhere with this topic - but the fact of the matter is that if we believed every label as people we would be scared to live. I'd worry about microwaving anything, I'd be scared to use a cell phone, computer, or Wii. I'd live in total fear of driving, flying, and everything else. I'd put sun screen on every single time I went out, along with lotion to keep me from looking old, and bug spray to keep me from getting bitten by a misquito. The simple fact is we can't let all the possibilities get in the way of living. I could walk outside my house, get in my car to pick up hubby from work, and be hit on the way there. That's not going to stop me from getting in the car. The fact that I could choke on my dinner isn't going to stop me from eating, either.

You mention not being able to play with your kids, would you hand your pain over to one of them to be able to do so? If it could be done would you trade your pain off to someone you care about so that you could do all the things you worry about not being able to do? That fact in itself is the one reason why I realize I have to deal with pain and they don't. I don't know a single person who could handle it.

The reason your friends and family don't get it, is they don't want to. If you had told me at 16 that it was possible to ruin the rest of your life by falling asleep - I would have laughed in your face. But thats what happened. I went to sleep a week after I was married, and woke up. My life was never the same after that. It never will be again. In my opinion one of the reasons that people don't like to talk about pain, they don't get it, they try to fix it, is that it's hard for them to grasp the idea of pain that doesn't go away. For most people you sprain your ankle, you take it easy a few days or weeks, and pain is gone. For most people they get a back ache, they take it easy get some heat or something on it, and like magic the world is right again. No one WANTS to have to face the fact that at any point something could happen that can't be undone. You say your friends are worried about their own lives - and it's true - most people don't want to have to admit that it could happen to them too.

So it all comes down to the same thing. Would you give up your future to not have the pain? Would you choose to not see your kids grow up so you didn't have to worry about being in too much pain to play with them? Would you choose to stop listening to music, because if you loose your hearing you'll miss it? Would I go back and not marry my husband so I didn't have to worry about how my living in pain effects him? Would I give up gardening because there are days I can't do it, and a day in the future I know I probably won't ever be able to do it again?

For me the answers are all no. I wouldn't give a moment of it all up, not for anything.

I plan on living my life despite the pain I'm in, because no matter how much it hurts, and how bad it gets, I have so much to live for, so many people who would be effected if I weren't here. If at some point I have to watch from a wheelchair then so be it, at least I get to watch.

I'm not sure if this makes sense to you, but it's the only response I could think to give.

Thanks guys, it's good to know there are people who understand and feel it too. I wouldn't dream of giving someone i care about this pain. I am actually terrified for my kids that they could end up w/ the RA as it goes down the line with my family... but I can't think about it. It keeps coming in waves. I can forget it for a moment, then it hits and I get all teary and can't talk. I hate feeling sorry for myself. I need to try an anti-depressant I know I do, I just have adverse reactions to a lot of them. They send me into a panic attack, or "manic" episode I guess they call it. I am hoping when I go back to the Rheumatologist on the 1st she will either say "oops! I made a mistake, you don't have RA" or maybe "It's not that bad, you have it but very mildly and you can just take these for a little bit, it'll go into remission and you'll be fine." The idea of taking pills everyday for the rest of my life scares me. I was never good at it. Yesterday morning I think i forgot to take my Prednisone and that night got this sick headache, the sharp stabbing pain that makes the hair on your arms stand up and feels like your jaw neck and side of your head is going to pop. That was when I realized I don't think I took it. I called my PM and left a message asking what they want me to do. I explained my financial situation and the Rheumatologist's findings and asked that they call me back and tell me what they want me to do. I am hoping it will be better next time I see him. He will see in my UA's that I haven't touched pot since the day I signed my contract, therefore keeping to the agreement. I explained to him last time I saw him why I was doing it occasionally, and he semed to actually be understanding about the fact I was desperate. He told me that it is just to cover them from losing their license, which I understand. I still think he could have gone about it differently but maybe we just miscommunicated. Who knows?

As of now I am only on the Prednisone. I take the baclofen rarely if i am having an extreme flare up and it's dumb because it never helps, I just hope it will every time I try it. Same with the Tramadol. I stopped taking it pretty much, it doesn't do very much and it makes me feel very neaseous (sp?) I don't even want the percocet back because even though it works great, it only works for 3 hours if that, and my script was always for every 6 hrs.... I don't want to stare at the clock anymore. I need to really write this down for the Dr. next time I see him huh? If i could have something that worked as well as the perc's but was like an extended release thing. i think i would be fine. Sure I would have the occasional flare-up or break through pain, but that sounds heavenly to me right now. To only occasionally hurt is like the promise of heaven in the afterlife....

Yeah I don't want to live the rest of my life fearing everyhting. I was talking to a frined of mine the other day (the only one who listens pretty much) and she was worried that I haven't gone out to do anything. I tried to tell her it is bad enough i have to get ready and go to work every weekday, and that takes me FOREVER to do. Plaus if i go out I ususally have to take the kids, and unless someone is there to help, I can't chase after a 2 yr old and a 4 yr old outside somewhere. Especially in this heat! I do miss the time I was on the perc's though, I was doing OK for the most part. Just got bad for a few hours here and there. Do you think if told my PM all of this he would listen and maybe understand? He's not that bad of a guy really, I think we just need to communicate better...

sjh,

just a thoought and a suggestion.  where/when do you live?  in the past?  in the future?  from what you've written, your mind seems to be in the future:  "afraid that my kids may get it."

my dear, dear friend, there is NO future and the past is dead, done, and over with.  all that any of us have is NOW.  That meand this instant.  are you hurting this instant?  maybe you feel the pain beginning; but are you actually HURTING this instant?  when my pain gets so bad that i don't want to live any more (and, yes, sometimes it gets that bad) i do all that i can to concwentrate on the NOW.  for some reason, the pain is in the past and i fear it in the future.  but it isn't with me NOW.

last night was one of the worst times that i have had in several years.  i don't know why.  i began an exercise regime a few weeks ago, but it's nothing that drastic.  i just want to move my body so that it doesn't just stop on me.  i took a morphine for the first time in two weeks, b ut it really didn't help.  i went to bed and slept fitfully all night until about 10:00 this morning.  why am i telling you this?  because when i woke up and hurt so badly that i couldn't get out of bed, i entered the NOW.  at any givin instant i wasn't hurting.  the fear of the pain to come, i found, was really the culpret this time.  only those of us with  cp can really understand this fear of pain.  but in the NOW, the pain wasn't there right that instant.  or the instant afterr.  i actually got out of bed and made it into the kitchen (to the sound of bugles blairing!).

i'm nobody special.  i simply suggest that you try living in the NOW ands see what it does for your peerception of pain.

hope this helps.

warren

SJH we KNOW, we FEEL, and we UNDERSTAND all that your saying. For many of this life has been this way for some time and thru it all we have adjusted,and survived and so have our kids. I raised 4 wonderful caring children to adulthood in this pain and they turned out just fine and maybe even better then if I had not had to teach them patience and acceptance of all things. We learned together how to do things differently to accomadate my pain levels or my restrictions and thru it all they did OK.

Kids are resilient at best and can and do adjust to any and all situations far better then we think so stop worrying about the kids as it is far better to count the quality of the time you are able to spend with them and not the quantity or the amount of exertion spent.

Make that appointment today for the pysch Doc as this is really important and our state of minds plays a really big part of our state of pain. How we handle these hurdles we must face is how well we get thru to the relief.

Just the panic alone can throw your pain levels higher!

Anytime I get to the point of panic I take a deep breath and think Ok I can do this, I can do this better then if my kids were doing this or my Mother was doing this,right? Just like the others said, I wish this on no one and I can handle this today and tomorrow can and will be better.

Each of us at some point in our lives are faced with the knowing that work is over for us and the need to find an alternative means of supporting ourselves and adding to our income has come. None of us wanted to have to draw SSD but there came a time when it was all but necessary so the time to think of that is now when we are looking for answers to our pain and seeking diagnosis. Make sure you keep up with all Docs,tests,records,names addys and dates seen and hospitalized. All of this is going to come in handy and make applying for SSD much easier and increase your chances of not being denied over and over. I keep a large accordian style folder and for every Doc I see I ask for a copy of my chart to enter in there and when it came time to apply I had everything in hand as my ability for recall of dates and such was sadly lacking thru the pain.

You cant think in terms of the end of your world but in terms as the begining of something new. It isnt easy but it is necessary for those of facing a lifetime of this pain.

Come here to lean as this is where you know you can count on someone understanding. Families many times dont want to face the fact your sick or you have something wrong with you. It is like if they dont talk about it or acknowledge it then it isnt there right?

YOu have little kids and you dont want to scare them into thinking your going to die or something and they really can blow illness and disease out of proportion in their way of thinking.

Sit down and make a plan,what do you want to gain what is your ultimate goal for yourself in this and how do you set yourself in the right road to get it?

I say this all the time,keep a journal of your pain and always take it with you to the Doc no matter if it is a new one or the same old one they can read it and see where your at at any given time.

I also forwarded this to the ALJ for SSD and it was entered into my record. Put everything in there as to when it starts,how it felt and be honest here and how long it lasted,what helped and what made it worse. Be fair and be honest with it.

I hope you find some relief and is it possible that your Rheumy will take over your pain issues as she might be better suited to treat this since alot of it is caused by the RA.

It isnt rational thinking to believe you can do this and get thru with no pain meds and we all wish it were so. I dont think there is one of us out here who given the chance wouldnt get off the meds that seem to control our very existance. It cant be done for many of us.

The long acting meds are far better as they are sometimes for some once a day or twice a day and clock watching is the thing of the past.

Anyone with a debilitating pain causing disease,injury or illness needs to think of meds and treatment in terms of long acting versus taking a pill or two every few hours and by the time it kicks in your in dire pain and lasts only for a little while and starting to wear off with several hours to go before you can take another.

I wish you the best of luck and hoping you can get settled into this life and find soem peace for yourself.

Dear SJH
you are not alone...

my only advice to add to what all the others have said
is PRINT this off for yourself & highlight the issues, questions, thoughts
and GO prepared to your next appointment

I could share my story
but its very much the same,

we are all in "THIS BOAT".... so instead of

of being in a ship thats sinking.....

maybe we need to see this differently...

we're on a cruise.... ENJOY your NOW .....

I agree with Warren
NOW is all we HAVE...


ttfn
and Think Positive

SJH,

I wanted to tap into what everyone else has saiod: we are all in the same bost and have all "been there, done that, in too much pain to get a T-shirt!" I agree: If we stay in the NOW, maybe we can call it a "cruise." lol

warren

CALL YOUR DR! or go to ER.Breakthru pain is the most painful there is,your DR must understand your condition and should have you on meds for this purpose.i he will not give you meds then the ER is the next step.I hope yo are better.