Tessie,

I'm sorry that you're having a bad time right now. I wish I could tell you it will on;y get better. I'mnot even where you are yet. I walked out on my rumitoligist & haven't been able to find a new one yet. Hang in there.

Tami

Hi Tessie,

I am so happy to see you post.  You have a lot to offer and share with others with your counseling knowledge. 

All the emotions and crying and feelings of loss of control are so right on with how RA affects us.  I have all the same emotions and have cried so much.  You and I are both "caretakers" in the medical field, we are the ones who are always strong for everyone else and when it is our turn have great difficulty asking for help or admitting how badly we feel.  The loss of control is extremely hard to accept.  You never know when the terrorist is going to strike so you don't make any plans.  I am a recovering Type A Control Freak.  I've been doing a lot of reading and introspection since acquiring RA.  Earlier this week I shared a Post talking about it.  I have been rereading Eckhart Tolles book  "A New Earth, Awakening to Your Life's Purpose". I had previously read it before acquiring RA and it is a whole new experience rereading it post RA.   I have been thinking about the positives of having RA and what is the illness in my body trying to teach me?  When I lost my health I went into a tailspin of depression, anxiety and fear.  Being seriously ill I have very quickly weeded out many of the worries and fears I used to have.  It puts the world in a whole new perspective where I can identify and focus on the things that really matter to me.  I have recently made the decision to be at peace with my body.  What was my enemy is now my friend.  I have decided to learn to accept the uncertainty of the future and to not have fear.  This freedom has virtually eliminated my anxiety.  I have stopped crying and I am actually beginning to feel vital and alive again.  I don't know if this is a coincidence or not but I am now on day 5 of the best days I have had in nearly a year!  The swelling in my fingers is gone, my stiffness is improved and my pain levels are calming right down.  April 1 we had added Plaquenil to my Sulfasalazine that I started on Feb. 1.  So I am probably beginning to reap the benefits of my meds which can take up to 3 months to fully kick in.  I know this may seem a little too "new agey" to some who read this but as a counselor I know you are acutely aware of how powerful the mind is and the mind/body connection.

I have some thoughts on prednisone.  There are two ways to use it: 1. a high dose that tapers off slowly over a few weeks and then you either discontinue or stay at a low dose.  The advantage of this is the initial high doses kick the RA down immediately and put it in it's place.  You feel noticeably better in 2-3 days.  2.  the second way to take it is in low doses 1-5mg daily long term.  Less side effects but also less effective.

The main side effect of prednisone is weight gain and fluid retention (swelling) puffy face, etc.   One month into my initial flare I chose the high dose option.  It was a miracle drug for me and within 2 days I could open and close my hands again!  My pain levels went down to about a 3, I slept extremely well and had an overall sense of well-being.  However, I am now packing around an additional 18 pounds that is very hard to take off when you can't exercise much.  I don't like the weight but feel it was definitely worth it.  You would stop your naproxen while on pred.

Since you are in so much pain right now I would recommend starting with the high dose taper.  You should see some immediate relief and then you can taper down to a low daily dose.  This could be a very good bridge until your Humira has a chance to do it's work as I know you have had stops/starts with it.  Make sure you are taking enough pain medicine around the clock.  Take it at scheduled times, don't wait until you hurt again.  Chronic high pain levels keep the body in high stress.  Pain must be treated aggressively so the body can relax and begin to heal.  You can get caught up in a very vicious cycle of pain/inflammation/anxiety.  Taking high enough doses and regular doses of your pain meds will break that cycle. 

I know you are sick of meds. but have you thought of adding an SSRI for depression/anxiety?  I started Cymbalta last July and it has helped me tremendously.

Take Extreme Good Care of yourself Tessie and don't feel guilty about it.  Take a nap when you need it.  Say no when you need to.  Try out asking for help and see how it feels, what emotions come up when you do.

Hope I was a little bit helpful.  We are all in this together and I am here to help support you and get some support for myself too.

Cheers,

Jamie

tessie

4/11/09 7:48pm

Seriously, WHAT did people do when they got RA BEFORE we could connect with people on the internet?!? It is so heartwarming (need a better word!) to 'hear' your responses, know I'm not alone, and know that venting IS safe. Marvelous!

 

Jamie: Lexapro, 10mg, forever! However, I am a bad girl about the pain meds, and you aren't the first person recently who has reminded me. I need to get control there, for sure.

 

Today, I'm "over" prednisone. Mostly after posting my vent, I have taken the bull by the horns for the first time in a long time. I wasn't even expecting a good outcome by jumping into gardening, because I was in so much pain and I had to stop so many times---each time thinking that I had done too much, injured myself, yada yada yada--and because I wasn't really doing it from a "healthy place." I was MAD. Furious. Frustrated. At my wit's end. So in the back of my mind was "you are going to regret this BIG TIME."

 

But you know what? It has been wonderful! Sure, it hurt, but I worked through it. Am I paying for it? A little. But I am STOKED that getting moving HELPED so much. Who cares if it took a big case of the PISSED OFF BLUES to get me going!

 

But also, posting that vent was so good for me. As true as it was at the time (and, probably, as true as it will be some other time), it is just as true now that I feel hopeful and powerful and peaceful again.

 

Although I spent the day with MTV Unplugged CDs as my soundtrack, the song "Rollercoaster of Love" has been in the back of my mind! Life is up and down and all around, and I (like you said Jamie) am not about to give up the jewels I've discovered by being put on the slow track by RA. It took me hours and hours to plant what would have taken maybe 45 minutes a year ago, but you know what? I carefully cleaned and planted and fed and pruned each plant. I feel intimately involved in my flower bed. I listened to bird songs. I watched a line of ants that was about 40 feet long. Amazing.

 

I'm also glad to report that hubby came home with a book buddy to help me read in comfort. Now to get to the store and check out the Tolles book!

 

And that's the Rollercoaster of RA. Progress, defeat, hope, frustration...but it's still all ME.