I'm done... | Arthritis Information

 

I went to my old doc today and should have know things weren't going to go well when the refused to let my father come back with me for some support.  I was told I was just going to have to learn to live with the fact that I'm going to be in pain the rest of my life.  So now I'm out of options, there are no other docs I can see around here.  I'm seriously on the edge of suicide here.  I'm so tired of being treated like I'm some piece of dirt just because I would like to see someone actually listen to what I'm trying so hard to tell them how I feel.  The only thing docs are concerned with is their damn ACR criteria and what the numbers tell them, they never listen to me when I say that I'm miserable all day long day in and day out...I have no quality of life anymore it's just a daily hell now knowing that I'll never feel good or be of any use to anyone.  

So thanks to all that have shown sympathy over the last few months and sorry to be such a downer/whiner about this whole thing but I'm at the end of my rope and could care less if I even wake up tomorrow. I hear ya, Bob. I know what you mean. Hi Bob, Maz-aust2009-04-01 21:10:48Bob Bob, if you have severe RA, how you are feeling is absolutely valid and normal.

Most of us, ahead of you in our RA journey have stood on the edge looking down into the dark abyss.

This disease is life shattering and life altering.

And the reality is, it can take a good few years to grieve our losses, pull ourselves out of the dark hole and find a way to get through each day.

I was dxed nearly four years ago. Only in the past 6 to 9 months have I felt as if I am beginning to cope with this thing. Up until then, it felt like I was in a long dark tunnel. Then after hanging in for so long...tiny little lights have started to show me the way through, to light my way.

The disease takes our lives, turns them upside down and shakes out all the pieces. We are left with the mess and have to start building the pieces together again that made up our lives. But some pieces are now missing. Some are new and weren't there before.

I am not about to tell you, 'no, don't kill yourself because it will all be better soon'. That would be real.

It can take 5 to even 15 years to stabilize this crazy disease. If your RA is aggressive and severe, then that's probably your reality, as it is mine.

I will tell you that if you choose you can do this. You will make it. And it WILL get easier.

None of which are probably comforting at all right now.

Maybe before you take any major action in any way, try to center yourself and breathe deeply. I believe your own instincts and intuition will know what your next step is and if you listen to the 'still, small voice' inside you, you will find your way through here somehow.


Hear, Hear Pat .... Hi Bob, most of us have been where you are now and we are still here, this disease makes every emotion known to man happen to us on a regular basis, we really are on a rollercoaster and at least when you are on a real one, they do stop eventually, we are stuck on this ride and the only thing we can do is get used to it, and use our peers on the ride with us for comfort and advice when we are really suffering and try to return the favour when its our turn to be up, God Bless, also if you have Faith, I always get comfort from mine.  Hugs Janie.   bob!! Giday Bob, Life can be a bummer at times and the docs can be a real pain in the butt when they do not listen to the patient.

I'd like to know what you do for a living or more, what you did do for a living.
I was a carpenter working in the housing industry and this RA thing hit me between the eyes.

I felt like I had whacked my self with the hammer on every joint in the body, I just hurt real bad.
After three weeks of fighting this thing I was reduced to crawling on the floor and balling my eyes out. I was a real mess physically and emotionally, I was done.

One of the things that got to me was that I could not even stand to have a piss, I had to haul myself from the floor to the sitting position and let it droop into the bowl.

I was done Bob, good and proper. Could not work, could not open a can of beer, could not have a decent pee, could not go fishing. What life was offering me during that period was zip, nada, nothing, better to be out of peoples way. I felt the need to lock myself away and not be seen because I felt totally useless, I could not protect myself let alone my family.

I've been where you are Bob and I know that it can be a very dark hole especially for a bloke.

Bob you are better than that Doc that would not allow your father into the consultation room as support.
Yes Bob I mean that, you are a better person than that doc.
You have to start telling yourself that.
You have to start rejoicing in the little things that you can do and forget what was, that part of your life is gone, it is in the past.

I'm not into hugging other blokes Bob but if I could be with you I'd be tempted to lay one on you just to let you know that there are people that do care.
You have many people on this board that care.

Rejoice in those little things Bob and bit by bit you start to gain control.
I'm still here and so are you.

Now tell me, what do you do for a crust.
Bob,

So sorry to hear of your anguish. You've probably been on every drug known to man without any luck but it sounds like a compassionate ear from your dr would mean so much. I don't know how close you are to Harrisonburg, VA but we have a new Rheumy here who is wonderful.Bob, my pain is not as severe as yours and I am new to RA. Still trying to get a handle on it and treat it. Just six months after DX and all is getting worse, a little at a time, no improvement. Very scary to wonder how bad it's going to get.

I have read your previous posts and know what a hard time you're having. But being new I have worked hard on dealing with my mindset and the changes to the very core of who I am, and what Stephen said is very smart. What's past is over, and you still have worth in this world, despite the actions of doctors who aren't worthy of the title. Get mad and keep searching for help. I agree with Babs that perhaps pain management is your next step. In this day and age no one should have to be in agony, keep trying different doctors, keep trying different drugs. This disease keeps changing on me, one day I'm pretty good, the next day I hurt, the one after that my stomach is boiling, and so on and so forth. And it takes so long for any medication to work. I am still waiting!

Get help for your pain, and like Stephen said, this is what we have and there are people who care about you. I know you're tired, but today is a new day. The hell with the bad doctors, we've all met some.Bob- I PM'd youBob you musn't loose hope. There are  dark days for many  of us who live with RA. Especially in the beginning it is hard. I am only a year or so into life with RA and I have been in many dark holes but somehow with God's help and the help of others here on the board and my family and friends I have found the will and the way to pull myself out. We are her for you and don't want you to give of the fight. Hang in there because there will be better days. Hold onto your faith and look to God for your stength. He will surely hold you up when you cannot. Hugs to you Bob.  I surely understand how you feel.  At my earliest during this journey I had been where you are right now.  The doctors (some of them) were truly horrible and made me feel like I was wasting their precious time.  But my PCP knew something wasn't right and we kept going until one day I met a great Oncologist (long story there) but he understood that something was not right and sent me to some of the finest doctors (some were a 2 hour drive away).  Anyway, he referred me to my current RD and she has been a godsend.  Please don't give up.  I know it is hard when this happens but you will find the right doctor.  One who will encourage you to bring a person with you for support, not lock him out.  Your doctor is the one with the problem; not you!  You are worth it and deserve better than what you are getting.  Hang in there and if you want the name of my RD (we're in south central PA) I will gladly give it to you in a pm. (((((((((((((((bob))))))))))))))) Big hugs for you, thinking of you.  Please get a new doctor, get people (your dad or others) to help you do so!! I have brought my dad into an appt and would have been upset if he was refused. Please take care, and write whenever you need to....BOB!!!  Get ANGRY!  You are worth so MUCH more than that guy has offered you!!!  I KNOW there are people around you who love and care very much about having you in their life... FIGHT for them, Bob!  You ARE worth it, you DO deserve more.  If you have to drive 4 or 6 hours to another RD or clinic.... GO GO GO!  I know your dad will be happy to go with you, and, I bet, there would be a line of others.

A person is not measured by what he can physically do, that is not your worth.  Don't let some hack make you feel you are not worth the effort.  In the mean time, go to your PCP and ask for help there.  RD's are not the only ones who can help.

You matter to us, Bob, because we are all right there with you and if one of us gives up, then we all stumble.  Please, please, please fight.

Me too~ to everything everyone else has said.  Please don't lose hope Bob.  Ask Joonie how good she feels now.  Ask her how she was doing a year and a half ago.  Night and day.  I don't know all your details Bob, but I do know that that Dr.  isn't omniscient.  Don't let him have the last word on the rest of your life.

Please check in and let us know how you are doing....As far as pain management you need to see someone besides your RD for that. Also what meds are you on? Also I totally know how you are feeling. I was just wondering how hard mentally it would be to think I had to endure this pain for the rest of my life. I am not mentally at a point to give up. There is always hope. The doctor had no right to say that to you. I know you don't think you can find a different doctor. It sounds like you will have to. I hate that you are going threw this. You are in my prayers.dear bob Bob, I know how you feel. I felt that this morning when I tryed to get up to do my daily morning things. I got dressed that took me a 30 min. Tryed to comb my hair that did npt go well. All I did was cried and cried. But you know what it did me no good. I layed there and wished I would die. But you know what I don't want to die. I have a daughter with cancer and she keeps me wanting to live. Put I know they say to me that he can't do no more for me. I am allgric to everything I try except predisone 20mg and that is not taking care of the pain. I am fat as a cow from the predisone. That enough to make a person cry. I used to be thin now I tripled my weight can hardly breathe. Those doctors don't care how we feel they only go by a guideline. Infact My RA Specialist told me that all the doctor's go by this guide line. I told him I don't care I am not everybody and I have allot of allgery's to meds. I bet I tried most. And had no luck but infections. He gave me hydrcone for pain and that don't even work. So my friend Bob you hang in there. okay. It seems like you won't get there you will. We all care about you. You suffer just like all of us . JoanOh Bob, I'm so sorry
I had a doctor tell me that I was going to have to live the rest of my life in pain ..... I chewed his ass out. I found a great RD who's goal is to return me to my normal life. My normal life! How great is that?
Please don't stop doctor shopping. The right doc IS out there.
And don't give up. I had a friend who killed herself. Devastated everyone. I myself have attempted suicide. Trust me Bob, it's really not the answer. Please take care. Bob, Maybe this is a good time to go see Dr. Rosian in Cleveland. Take  Care. Bob Funny you should mention that Lisa my appointment with her is May 15 @ 11am.  I will not cancel this time believe that.  Now I just need to figure a way out of the situation with the doc from yesterday.  They are supposed to arrange for me to get my remicade in their hospitals infusion center.  I've had only three infusions but feel absolutely no difference whatsoever.  She feels I should do six months of it before I can tell if it works or not.  I thought it was three months and if nothing then give up.  I was also told that it should begin to give a good kick after the third dose and so far I'm getting worse not better.  I'm nearly maxed out on MTX and I don't want to talk about pred anymore as I've had enough of it to last a lifetime.  Hi Bob, I've been away from the forum for 4 days and just read through this thread.  I ditto everything that everyone said and then some and I'm very happy that you have the May 15th appt.  Talk to the new doctor about being referred to pain management.  I have been in your shoes with the pain and despair.  Don't give up. Find another doctor. Your doctor should not have a defeatist attitude and tell you to live with the pain. He also had no right to not allow your father in the exam room. That is your choice.  My first rheumy was a total piece of work also.  Never listened to anything I had to say.  The meds he gave weren't helping and he wouldn't give me anything for pain.  I was in agony from the pain and had completely lost hope.  I fired him when my mother found me another rheumy.  I cried after the first appt with the new dr.  And yes my mother went into the exam room with me.  I wasn't a child either I was 45 with kids of my own.  I cried after that appt on the way home.  I told my mother-he listened and he really cares.  We were going to be a team and work together.  He told me being in pain was not an option for him.  He even gave me a prescription for pain pills at the first exam. He worked with different meds until he found a regime that works for me.  I have my good days (pain pill and pain free) and the occasional flares but it is manageable.  I am no longer in the excruiating pain I was once in.  Don't give up hope. I was going to go get another opinion from the doctor that was mentioned above but I'm having second thoughts now.  I got results from labs and xrays from the other day and apparently I have no bone erosions that are visible on the films.  There is a ton of mention in all about significant joint space narrowing as well as moderate evidence of arthritis and lots of bone spurs but according to all the labs and xrays I'm apparently within the ACR's criteria for remission.  Funny, but I don't remember feeling like this when I was most definitely in remission many years ago.  I couldn't have said it any better than Bodak. Would just like to say that with the spurs it sounds like you have a good case of osteo going on, too -- and believe me, osteo hurts -- hurts like hell.

Keep that appointment.Maybe it is time to get off the pred? Or at least lower your dosage. Maybe the new RD will want to take you down on the pred. I know when I went to my old RD he took me off the pred when I first started going to him.

 

Keep the appt you got with this new doctor. She might see more wrong with you than the current RD. I know my old RD would not have done as much for me as my current RD. I am happy that people on this board talked me into going to my new RD. Best thing I have done for my RA.

Bob, you owe yourself a second opinion.  What will it hurt?  Please go. yep.... I'd definitely see the other doc.....  it never hurts and you already have the appointment[QUOTE=LisaOnline]Bob, Maybe this is a good time to go see Dr. Rosian in Cleveland. Take  Care. [/QUOTE]