It was almost a year and a half or so before ra didn't hijack every thought in my mind. But, now it doesn't rule my mind and I can now do things without giving it much thought. One thing you are going to have to realize is that you are very sick with a very serious disease that probably isn't going to go away. Those that don't support you or are negative towards your very serious situation need to be kicked to the sewer drains and I don't care who it is. If I were to run into your boss, I would make him look and feel like a piss ant, he's lucky it's you and not me. Keep singing, it only gets better.

 

LEV

Take care

Cathy

I was reading your post and thinking that it could have been me that posted that a year ago.  I was the same way.  I especially related to the comment about your first thought when you woke up was that your hands hurt and you had RA.

 

Last year, I started Enbrel.  Sometime around the third shot, I noticed I wasn't in pain any more.  Not any morning pain or stiffness.  I had energy too.  I'm sorry to say that I still had memory problems though.

 

My point is that you don't have to accept feeling like this unless you have existing damage or unless you've tried all drugs out there and they have failed.  Before I started Enbrel, my RD said that my RA was "moderate to severely active" even though my labs were normal.  I never understand why sometimes labs can be normal and it's obvious the disease is active.  I'm thankful my RD treated me and not my labs.

 

I encourage you to talk to your RD about another treatment.

WTBRAF,
hope you're feeling bettter. glad to see you posting again.......

 

I have received a lot of good advice and the validation you have given me means so much! Reading all the responses really lifted my spirits.

 

I am printing out the responses for a couple of reasons. I want to read them all thoroughly again so I can digest and make good use of all the suggestions, visit the link. As I mentioned my memory is for crap so that will help me to follow through. Also when I am feeling low and alone I'm going to read them to remind myself I do have people that understand.  There are people who are actually experiencing these same feelings or have been down this road at one time.

 

Also I am thinking of finding a counselor experienced in chronic illnesses. I'm pretty sure it would help me to talk these things out. Also, as was noticed I have people in my life that are having a really negative impact on me on top of having RA. And yes it was both before and after. I know that I am allowing it. No one can make you feel bad unless you let them. However I need to learn how to believe in myself more. I kind of feel like a beaten down dog- instead of feeling like How dare you! I am feeling like Something's wrong with you! Buck up, why should anyone have to put up with you and your RA side effects? Do you think anyone feels like dealing with your feelings- it's your problem, no one elses. Get a handle on it! I know it's wrong but I don't know how to make it stop. When I stick up for myself it seems to get worse. People are used to me being the nurturer, the easy, breezy one, the one who gives comfort. That's me and I like me. Sometimes I need people to be that way to me. When I speak out about not having these things reciprocated people don't like me. They get angry. Then I start doubting myself. Did I come off too nasty? Well...I probably sounded like they do...but that's not "me". Then I don't like myself.

 

Oh my- I am going on & on I need to stop! Save that for the counselor I have this book and I love the author's attitude (someone with RA, very realistic but upbeat and positive): You received some wonderful advise. I don't have a date, as it took a long time to get diagnosed. I was suffering so long that date (the month of February) is still a celebration to me. Perhaps there is a way to not focus on that date or change it to a happier day. I know the day my father died was very sad for a long time but I've tried to focus on his life rather than is dealth, now it is just that day not the weeks before too. But that isn';t something that doesn't happen over night anyway.

Its over 5 years for me, and getting family, friends, co-workers to adjust to the new me has been impossible. From mentioning every pound increase-which fluxuates with prednesone, not mentioning it when the pounds fall away (off pred, yeah). Finding someone who understands, be it a therapist or friend in a similar situation will be a big help. We can't force them and we just end up blaming ourselves. Don't blame yourself, its like being hit by a bus. An accident that is not your fault. It is easier to be brave when we are suffering and we drop our guard when we feel better. Sorry.

Finally, I don't think you are getting enough treatment or being treated for brain fog. Brain fog comes from chronic pain. It changes your brain chemistry and causes muddled thinking and depression. A half dose of an anti depressant really stops the brain fog with in two weeks. I know making mistakes at work are a real moral killer, makes you feel like an idiot. I recommend NON generic antidepressants. The generic don't work as well and add on the pounds. If doctor prescribes one, try the full dose to knock out the brain fog and then see if lowering it to once a day (for twice a day normal dose) does the job. The more expensive non generic med would be two months worth and cheaper and still stop the brain fog.

You are very smart to catch all the nuances of this terrible disease. You are double smart to recognize and write so well the position you are in (and many others just not as articulate). Like someone else mentioned, finding something that is yours to be passionate about and exercise really really do help.Bird Girrl2008-10-20 05:34:35Thanks for the new responses. I'll see if my library has that book. you got the goodvibes