Turns out my rd got an award for best clinical rheumy in the US last year
This time she said all my tests came back positive, I have extensive damage and severe RA. Then she said the good news is that the Enbrel is slowing the progression and she does not want to mess with that. Then she said I have severe fibro and she was sorry. She is sending me to a pain management clinic. So most of my pain is permanent damage and fibro. She said I should not be doing housework and would support me to get help around the house. She said I was one of the unlucky ones
All of this and traveling drained me. I guess by tomorrow it will sink in. She said I will never be able to work again. Talk about saying it like it is but the thing is she was nice.
Let you know how I feel tomorrow. LOVE Rox
uh...can I get her address and phone number please...she sounds like a dream..
good to hear you got some support...lets put this lady in a refridgerator box and pass her around the country...lol
I'm sorry Roxy, that's tough to have to come to terms with. I'm glad you have someone who is understanding and honest with you though, and who believes you! Validation can mean so much.Hey Roxy, you won the RD lottery. Good for you. You deserve her.
If you can't get her into the refrigerator box, maybe she'll a busload of patients from around the country?!
As great as it was to experience her kindness and empathy, though, it must have been a blow to be faced with such a blunt and grim report. It sounds like you already knew pretty much what she told you, but hearing it so flat out must set you back on your heels. I can imagine it will take a little time to process this.
I'm happy for you though to have found a good one.
Roxy -- what state are you living in? What is her name?
Yes, send to her to me right away. As you can see, I am quite desperate.
But I'm sorry that the news is so bad. Only you knew it was true because you live in that body. But maybe she can help you build up to a much higher level of functioning now that she really realizes what you are up against. And, if she's going to help your family understand and get you supportive services, honey, that is gold.
Finally, someone in your corner. I'm awfully glad about that. I'll cry with you over the rest, but I have been anyway because I know how much you really, really hurt.
Now a moment. Reflect. A few months ago, you were waiting to get Brett home, working to get Kelsey home, striving to get Colton with you, bought a house, moved, looked for services for you and Kelsey and now it's all starting to pay off. What a great woman you are! Formidable and feisty just like you've always been.
New adventures do await you Roxy. I'm sure of it. And, don't forget, one of these days, I'm coming for that visit. And, if we have to rent a couple of wheelchairs, we are going for a long walk some beautiful place that you love.
When you are up to it, the Sierra Club has branches that help blind people go on camping trips. I would think that they have something for people that have mobility problems. Keep it in mind.
Roxy, I am sorry the news was bleak but at least she was honest and caring, that is at least a little something.
I agree with Deanna, you have come so far. We are all proud of you! Love and hugs
Sophista- She is in Portland Oregon at the teaching University. Can't remember her name. She is very SMART and I had a 45 minute appt. If you are in Oregon - her name is Dr. Goel. She is well known as an autoimmune authority. The first visit she was intimidating (except for me because - of course - I don't get intimidatedIt sure was bad news. But it was not new bad news. Just a confirmation that 'YES' it is awful.
When joints like hips are severely damaged you can replace them. Todays hip replacements are very good and last long. My little bro who is 48 had both replaced in 2006. The last one was done in Oct. He is a very happy camper with his hips.
I know you have pain in other joints as well, but I'm assuming that your hips are the worst.
Damage can be repaired, maybe not fixed completely, but repaired. Start thinking in terms of rehab. The enbrel is doing its job - stopping progression.
I just re-read my note. It does not sound comforting the way I wanted it to. If you have a car wreck you get the car repaired, right? My car wreck has taken 30 years and yours only took 2 or 3 years - but there is still plenty of hope.
I am going to find a team of orthos and get some of my broken stuff repaired.
Crunchy, If you are on a biologic that is working, you get taken off of it, many times when you are put back on it if alternative does not work, the original biologic may not work as well. That is how it was explained to me and I have noticed it to be true. When I go off Enbrel due to infection, when I go back on it, it does not work as well as it used to. She told me I had a lot of damage in a short period of time which is why my RA is considered severe. Buy from last xray to this one, the damage has slowed. That is a good sign. The bad news is I have severe RA and there is no getting around that and I should be thankful that Enbrel is slowing the progress. At least that is how I understood it. Thanks Marian. My rd thinks a lot of my hip pain is fibro. I guess that is good but it sure does not feel too good