Hello, all, Back again... LOL

By Barb Monday, September 17, 2012

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, I am praying this time I'll be back for a while... Only time will tell. I have again had some set backs and been hospitalized with being quite ill. This time for an arthritis crisis and uncontrolled pain. It is better now and hopeful it stays this way. Wanted to post a link to a very interesting article about the percentage of RA patients whom actually make it to see remission. It seems very elusive and mysterious... here you go. http://www.medscape.com/viewarticle/769253?src=nl_topic

Now, don't put too much weight on this article (because it is a little depressing if you really want to grasp that all elusive Remission), as I don't because what I say now is "How am I doing today?" I am focused on TODAY now more than ever. If I feel good today then I can do my exercises, play with my children (and the dog), get some much needed chores done, go outside and enjoy today... because tomorrow is coming and only god knows how I'll feel tomorrow. At least it keeps my psyche focused on Today and allows tomorrow to take care of it's self. Hope my RA friends on HealthCentral are doing well, Today! Barb.

"Walking on Rocks": An Invisible Complication of RA

Comments (9) | Add comment

V, Health Guide

9/17/12 9:21pm

Good to hear from you again, Barb! Sorry to hear you have been hospitalized again, though. Did the docs change your meds, and are they helping your RA?

I like your attitude, and SO agree with it. I concentrate on the day, sometimes the hour, because feeling well may not last all day. The reverse is true, too. Sometimes I may feel bad for a while, but as the day wears on, I feel much better. One never knows with RA.

My philosophy is to live and laugh and learn as much as possible. Forgive often and easily, and grab all the joy I can stuff into my day.

Wishing you many blessings, Barb.

Barb

9/18/12 11:23am

Well Thanks, V. You have always been a very positive poster and supporter. Sometimes, I feel like just giving up, then I look at my children, my hubby, and my life and realize they would be crushed if I did and no matter what I am going through, I am truly blessed. So, I pull myself together and go on.

Unfortunately, what we have discovered is that my mixture of Arthritis has been going on alot longer that my diagnoses would suggest. The best educated guess is around my early twenties, which means I went about 18 years without treatment. During the early part, I really didn't have symptoms, so nobody would have been able to catch it, even me. One reason, Arthritis has been dubbed an "Invisible disease", not just because we look fine but because it can cause damage without even knowing. Now, I know. I have to laugh though, (morbid thought coming), because by the time I get placed in the ground, even if I get creamated, there will be a green glow that follows my body, because I have radiated all over, more than I would like to admit. hahahahehe... LOL. My theory is that when we are done with this world and all that is left is crumbling buildings and cemetaries filled with bodies and this green hue that whomever comes to inhabit this land will decide to go, for fear they will begin to glow as well... LOL

V, Health Guide

9/18/12 9:19pm

Hi, back, Barb!

Yep! You got it sister! One day at a time, and find the good, wonderful things in life and embrace them. I am asking the ortho for Lidoderm patches for my feet tomorrow, or something for my feet. Have you ever used Lidoderm patches?

Hugs,

Barb

9/20/12 12:25am

Nope, V, I have not personally utilized Lidoderm patches before, but I have applied many to my patients. Patients whom have stated good relief from use of the patch. The biggest problem with them, is that some people are sensitive to the adhesive and it makes the skin redened... Hopefully you will find some relief.

To answer an early question, yes, I have had all of my medications changed and I am attempting to stay under 5 prescription medications at a time. My main medication is Orencia, which I have only been on for 5 months, but have had some decreased in disease activity and pain relief. It is most difficult to find a happy balance and then to maintain that balance... Hope all goes well and good luck to you. Barb

Lene Andersen, Health Guide

9/19/12 1:39pm

so sorry to hear that you've been going through a rough time - the hospital is no place for sick people. Glad you're back home again and able to connect to what brings you joy get you through the hard times.

The new ACR/EULAR criteria for remission are incredibly stringent. If you follow them, not a lot of people go into remission. However, it's important to note that these criteria are intended to be used in clinical trials, not in your doctor's office. When they're used in clinical trials, they will help determine the effectiveness of new drugs and in that case, being very stringent helps. There is some preliminary work being done on developing criteria to be used in clinical practice, but nothing major yet. Check out my interview with Dr. Yacizi about remission from RA. Rates of remission vary depending on which tool you use to assess remission and if you use the DAS-28 scale, the numbers are much better. Still, not everyone enter into remission, but it is possible to achieve low disease activity and for now, that sometimes has to be good enough.

Barb

9/20/12 12:18am

Thanks Lene, It has been a little rough going lately, but I do have a little better attitude about it all. That's not to say that somedays I still look in the mirror and say, "How are you going to do this today?" or "Why you?". Those days still happen, just not as often.

I have been reading a lot, and with my research have noticed the differences between clinical trials and Dr. office reported remission. It is very interesting to me that even today with all of the tools and criteria that Rheumatologists have at their disposal to measure disease activity, there is still a huge difference between practices on how they actually collect the data. Also, the EULAR seems to be at the forefront of clinical strategies for use in Rheum. offices and currently most of them are not in use or have not been adopted by the US, not certain about Canada. Anyway, I consider myself a mere toddler in terms of knowlege about Reumatic diseases and progression of being able to successfully treat it. That is why, I look to those who have the knowlege to point me in the right direction for research, ect... I remember reading your article prior, but will have to read again, as I am certain I did not retain the information. I will keep reading and asking questions, so hopefully, when I meet someone new to this disease, I can offer support and information to them as I recieved when I started my journey, as well will point them here.

Oh, I have to appologize if it seems I have rambled, after re-reading it seems that I have, I am attempting to use my voice recognition software to write with and I must say it is harder that I thought it would be... hehehahahahe... Here's to another day on each of journey's in this life... Barb.

Lene Andersen, Health Guide

9/20/12 10:07am

using voice recognition software to write happens in a different place in your head than writing with your hands. I've used Dragon to write for years now and it initially took me a while to switch over to that place, but you get there. With practice. One day, it'll just become seamless. I do notice that when I write using Dragon things get longer. I'm better at organizing it in my head before I dictate, but I still ramble a little bit. Sometimes a lot.

your comment reminded me of something I said to someone the other day. Coping doesn't mean you never have a rough day or melt down. Coping means that you get back on the horse that for you after you're done crying.

I do see the ACR/EULAR criteria being used in clinical practice, as well. In the absence of any practice criteria, doctors are adapting them. They do the best they can with what they have, but the working group that developed them was very clear about this being intended for clinical trials. As in most things in life, people nodded sagely at that and went ahead and used them anyway.

V, Health Guide

9/27/12 8:06am

Had you on my mind this morning, for some reason. Just checking in to see how you are doing?

Blessings,

V, Health Guide

9/27/12 8:06am

Had you on my mind this morning, for some reason. Just checking in to see how you are doing?

Blessings,

Hello, all, Back again... LOL

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