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That was a fun few days that I could do things.  I woke up this morning and it was snowing outside.  Beautiful.  I could barely make it to the stove to boil water.  I don't know if it is stress, I am stressed out about Brett coming back, wondering if he is only coming back because he feels obligated and I am worried about how much I can do for Colton.  My fingers are in agony, my hips are aching, my neck hurts, I am in pain.

Looking at my options.  I can change biologics but I cannot tolerate MTX and I am afraid of the other biologics.  I can go on morphine.  I go to the doctor Wed.  Something has to change.  I feel my body getting more  crippled every day.

I really feel angry and doing the "why me"?  How could this disease have taken over my life.

I really didn't post this for feedback.  I know there is nothing you can say or do to take the pain away.  I just needed to try to get my frustration out.  I had three really good days.  That just is not enough

you guys can ask me to leave.  i am not much support or encouragement right now.

roxy39049.0055671296Roxy...

I am so sorry to hear that you are feeling so bad.  I will be praying for you, asking the lord to lead the Dr., to the proper treatment options for you.

Sending hugs and prayers,
cowbells
Maintaining a positive attitude does make a difference and so you just have to keep telling yourself that just like before you will get better again!Roxy - in my case I was bedridden with pain nearly 10 years ago. I have taken paracetamol, slow release anti inflams (gave me stomach ulcers) & another drug that I cant remember the name of.   I now take paracetamol, codeine when necessary & sleeping pills (which I hate as they are so addictive but at least I am sleeping). I have never had methotrexate, prednesone or biologics. I have been very tempted at times but basically I am very stubborn & would prefer natural therapies but then at times I just love my pain relievers. When I was bedridden my daughter cooked vegan, mainly pulses & stir fries & because I was so sick I had very little else to eat. That seemed to help me. I am sure I am worse when my diet gets bad but it is hard to eat well when you have RA unless you have a personal chef! After a while I started walking a few steps each day, then a few steps more & so on.   Now, 10 years later, I have some flares, prob. in joints that were damaged, still get terribly fatigued & depressed - but I have good reason to be depressed as do we all. I think we all have to do what we feel most comfortable with. I think there are arguments for all ways of treating RA - for some there is remission but for a lot of us no matter what we try the results are more often different to someone else's results. I think
opiates for a short time until you get the pain under control would help & then reassess what you would like to do. The most important thing for me (& hardest) has been to pace, pace, pace myself & short walks daily as well as diet. The results havent been perfect but we just have to keep trying. Take care of yourself Roxy.Roxy - I should have added that compared to 10 years ago I am generally so much better physically than I was then,
mentally, well............Roxy -  I'm sorry that I can't help with the pain, but I'd like to send you a hug and a shoulder to lean on.   Take care.
- J.
I really would consider the other biologics. Typically if you can handle
one you can handle the others. They may not be effective but they should
not cause you the crazy side effects like MTX. Of course, you could have
an allergy but that you wouldn't know until you tried it. Anyway-it took
three different tries to get the one that is working pretty good for me.
Enbrel and Humira---big thumbs down! Remicade has been the best so
far. You just need to find what works for you. But remember--there will
be something that works for you. It's just a matter of finding it!

Beckyrocckyd39048.7824537037

I know you are afraid of the biologics, but if they make you better and give you your life back, it might be worth the gamble.

I'd still risk it if they would offer them again to me. I won't know until I hear what the Rheumy says next.

But Roxy, you did have 3 days of good. When was the last time you even had that? It's a sign that things can improve. Besides, it snowed. The weather changed. You did stuff.

Will you give yourself a break just once and awhile? I want you to feel good.

Hey Rox...just wanted to tell you that I love your new myspace page and the videos are great. I really loved the one of Kelsey. She is just soooo cute!!! She looks really really young in the pictures, but when she starts to talk she is more her real age. She could seriously pass for 12 or 13 though. Is she little too? She looks tiny.TODAY.  May have been my worse day.  Three good days made it worse.  I have had suicidal thoughts all day.  They just sneak in but don't worrry.  I look at my Kelsey and I know I have not made preparations to take care of her.  I took too many painkillers and then drank.  I am still in agony.  I cannot sit still.  I writhe in pain.  My whole body hurts.  How could I have felt so good yesterday?  5 days my husband and stepson come home.  Maybe it will be better.  Two days I go back to the doctor.  I don't care anymore what it takes - I cannot live like this.  This is not quality of life.  I cannot function and I cannot cope.  What kind of life is that???????  I will try anything, it can shorten my life as long as it takes me out of this pain.  I had no idea what pain was until RA invaded my body.  I FEEL the damage it is doing.  2  days, I will beg, grovel, get angry, whatever it takes, but I cannot handle this pain.  no I won't go to ER.  Kelsey needs me.  Two more days.  RA has ruined my life but I will never forget what a good life I had.  I pray tomorrow I can appreciate life.

There is light ahead. There is hope. You WILL get through this. We're all here for you. Rooting for you. Prayers, hugs,wishes, thoughts, all sent to you today. I just got done looking at the videos on your MySpace page.  Do you realize that if you find a biologic that works for you (enbrel just may not be working for you at this point) that you have a high probability of returning to the activities that you love so much?  I am not making any guarentees (sp?), I am just saying that when I am on my meds I can do just about what I want with very few adaptations.  I can't hike as long but I can still hike.   I can mud bog. I can drive.  I can clean my house the way I want it done.  You see where I am going with this.  Yes, there are still crappy days.  Weather changes suck.  But not as bad as it could be if I didn't have humira.  I still swell a little.  But nothing to keep me down in bed. 

I am not by any means trying to pressure you into doing something or taking any medication.  I just want you to see the upside of biologics if you decide to give it a go and find one that works for you.  I feel that watching the clock tick time by and waiting for the next time you can take the next painkiller is no way to live if it can at all be avoided.  I just wish the biologics worked for everyone as well as they have worked for me.  It is frustrating to see that it doesn't work that way for everyone. 

What you do is your own decision.  Like I said before, I just wanted you to see the upside of what biologics can do for you. 

You are all so right.  I think I need to change biologics.  Enbrel was really working but last week it lasted three days and this week NADA nothing.  Can't even tell I took it.

I don't want to be a drug addict.  If I can control this pain with biologics I will, but in the meantime, I am getting something stronger for pain.  That pain makes me feel crazy. 

Thanks Liz.  I have been so afraid of trying Humira or Remicade.  Especially after those studies.  I have had two cancer scares in my life.  I really loved Enbrel in the beginning.  It will be awhile until I can change as I still do not have the appt. with the rd.

Anyway, sorry I flipped.  I sure did too.  Better this morning.  Didn't get to bed until almost 3.  Today seems better.  I had better get my pill and "stay ahead of it"

 

I am doing nothing today except for recuperating from my horrible day yesterday.  I am better.  I think you guys are right.  As scary as it is, I need to change biologics.  I so miss that Enbrel "high".  At least I got three good days last week and today I am better.  One day at a time. 

www.roadback.org  or www.rheumaticsupport.net

You will find many RA patients who are having success with something many rheumatologists will never tell you about. I have scleroderma, and mine certainly didn't. I found out on my own, changed doctors, and feel that I am on the "road back" to good health.  All the best!

Hi Roxy,
Boy of boy, have I been out of the loop for the last week!  Now, please don't have those suicidal thoughts and know that there are many people (me included) that need you.  I know the stress of Brett coming home has added to the pain you are going through.  The remicade has helped me so much with the progression and I really think you should consider this.  Talk to the Dr. tomorrow and see when the earliest date possible would be to try it.  Enbrel didn't work for me.  I still have some other things going on with my knees, hips and groin pains, but I'm not in nearly as much pain as you are.
The snow must be beautiful..  it is wonderful just to sit inside and watch it with a cup of cocoa and a fire going. 
We are having a very cold spell, its only 37 during the day, and no snow yet. 
Please take care, for all of us here.... we love you.
Sweet Vicki,  I am taking care but I can't help but look at the house that I cleaned on my three good days and think "this is what my boys have to come home to"
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