23 November, early dawn sunday

Dear All,

First off, I'm happy to let you all know that I've now had a strong response from Enbrel, which I started 3 weeks ago.  Right after my third shot this past wednesday, within about 2 hours, I got my miracle after more than 28 or so years of intense suffering, increasing disability and dysfunction, on and off chronic severe clinical depression, anxiety attacks, increasing agoraphobia related to pain and fragility, terrible and crushing constant fatigue, really debilitating fatigue, and more and more fear all the time.

The Enbrel is working, working like gangbusters, beyond anything I ever thought I had the right to imagine.  I had resisted trying it for several years, because of all the research I'd done that revealed just how toxic the drug is.  i also was very wary (to put it mildly) of living with a suppressed immune system.  I strongly preferred not to add lyphoma to my struggles.

But I got desperate.  I was failing fast, in too much pain to bear even with strong doses of two different kinds of pain meds.  My life was just shut down to nothing.  So finally I was ready -- with some very good advice from people on this site -- and I tried it.

And now I'm in the midst of a huge adventure.  The first couple of days I was just happy, like, over the moon happy.  Not only was the pain about two thirds reduced, and the stiffness reduced to a minor element, but really the most startling thing for me has been the full-blast return of all this energy -- more than I've had in 20 years, or perhaps more than I've ever had.

And it has taken me this long to be able to admit to myself that this is not only wonderful, joyful, the miracle I didn't even think I could dream about -- but the difficult thing is that it's also confusing and scary.  This is hard, confusing to talk about.  I'm struggling with feeling guilty.  It's NOT that I have nostalgia for the illness, or that I'm afraid to be well, (or so much better) I promise you.  But it's been so long -- for 20 years I've been terribly ill, I now can see that I was even more ill than i realized, and my whole life was deeply interwoven with the illness -- sadly, and without me realizing it, the illness was me.  

I'm a smart person, educated and well read, and thoughtful.  I'm a buddhist practitioner, and I'm fairly well versed in psychology, I have a great therapist -- and so I know enough to observe the danger of identifying completely as a victim, of taking that dark, wrong path to idetifying as a "professional patient" or official sufferer.  I honestly didn't think I had done that.  As far as I knew, I had really worked hard not to.

But now I see that a certain amount of this has been inescapable, inevitable.  I went through youth and early middle age (I'm 55) with unrelenting pain, exhaustion, and increasing disablility as basically my mode of being in the world -- a world that got smaller and more limited as the disease progressed.  As I lost one pleasure or ability after another -- I gave up playing the guitar and sold my beautiful instrument so it wouldn't just sit sadly in the corner, after being a passionate hiker I gave up being able to walk more than few steps, as someone who loves a beautiful environment, I gave up being able to wash dishes or make the bed -- I accepted these things and adapted to them.  I thought it would be unhealthy to hang on to resentment or bitterness about these losses.  As a serious buddhist, I thought sanity was accepting my changing life limits, I thought that was sane. 

And I still think it was and is.  But one "side effect' of that approach, apparently, is that I didn't pay close enough attention to the fact that I was gradually letting my whole sense of who I am become grown, like a vine, around the disease.  I got so awfully used to saying, "Oh, I can't do that, I have RA, but thanks for asking."  Cancelling plans became a way of life, until I mostly stopped making them.  All of my energy, what very little there was, went into managing pain.  I rarely even felt able to talk on the phone -- I was so deeply tired of answering the question, "How are you feeling?"  So I was gradually withdrawing from most of my friends.  I just felt calmer, easier, alone.  And yet I was having to ask for help all the time, because just about every detail of ordinary daily life was becoming too much for me.

Then suddenly, in one afternoon, that all seems to change.  I'm walking around, skipping, full of energy to the hilt, brain it up like 4th of July, can't stop talking, much too wide awake to sleep, up for days, going to a friends' house where they sweetly wanted to celebrate my seeming recovery with some champagne toasts.  I was so up that I was Ms.Entertainment.  At one point somebody put on show tunes, and I danced around the room singing "Singin in the Rain."  Funny, right?  It was terrifying.  I felt in the grip of something that I totally could not control.

Yeah.  At that point I realized that I was terrified.  I was in what felt like somebody else's body, certainly not mine.  My friends were looking at me funny, with looks of deep concern.  I heard myself chattering and laughing and not able to stop.  i started to say, "I don't know why I'm acting this way, but I can't stop."  And then I finally said what I had been needing to say. "I'm happy, but I'm scared."  I felt so guilty -- how could I be scared when such a brilliant miracle had occured?

For the rest of that night (last night) I had a full blown manic episode.  I'd never had anything like this in my whole life -- my problem has only been depression, and even when I was feeling fairly well, on good days, I tend to be quiet and slow, a solitary, contemplative type of person.  So last night I felt possessed.  I could not control what was happening at all, and this was a truly horrible feelings.  I started shaking, trembling, crying, actually at one point holding on to my sweet little cat to try to connect with her sweetness and sanity.  (She clearly knew I was upset and was really amazing -- even wiping my face with her paws.  Boy did she earn her keep, this little animal, i love her to death.)

Finally I called a friend, actually my ex true love (i.e. me still, him not), who was a good friend and talked to me very articulately, knew exactly what was happening, and told me to take 2 ativan.  I had forgotten I even had them, since I hardly ever use them, but he remembered and made me stay on the phone while I took one.  And it did help, I sort of came back to earth, though terribly shaken and full of shame.  I felt I had caused this awful thing by allowing myself to go without sleep because I felt so awake.  

Today I've been exhausted and sad, struggling with shame and wondering if my friends were disgusted with my idiotic behavior.  But these friends are stellar people, and when I called this morning to apologize, one of my very wise women friends offered an explanation, and I really would love to know what you all think.

She said that I hadn't had any energy at all, much less the energy of a steam engine, since I was about 17, and when it came on so strong, so very fast, neither my body nor my brain could adapt that fast, and I had no idea how to control or moderate it.  I have a sensitive brain -- I do react, or overreact (so hard to say this without feeling shame) so easily.  I do have mood swings, though my therapist and doctor both say that I'm not bi-polar.  But I have very little ability to deal with stress.  I overwhelm too easily.  

So first, I didn't think I could admit to myself or to anyone that it was frightening to feel THAT much better THAT fast.  I had no idea what to do with it.  I thought i had to instantly, like this week, snap into being fully responsible -- go out and get a job immediately, or apply to go back to graduate school right away, clean my whole house, etc.  

So...it's not the end of the world.  No permanent damage done, I don't think, and my friends don't hate me.  (I'm just so extremely sick of being this person who people have to worry about!!)  I learned a lot -- most importantly, that I must keep a regular schedule, and not go without sleep like that.  I guess what it is, is that I need to begin this new life, the life that, it seems, Enbrel may be returning to me, slowly and gradually, and first of all learn how to take of myself in healthy and sane ways.  BEGIN learning.  

I'm still feeling amazingly better from the Enbrel, and I'm still joyful and deeply grateful.  And I seem to have discovered that it's also necessary to be honest and admit that I'm also scared, a little confused, and unsure of what to do with this lightening -speed recovery.  

It would help so much to know if any of you have ever felt anything like this.  Also -- what's your experience?  Will the Enbrel keep on improving my body and energy?  Will it just quit working at some point?  Should I expect to still have good and bad days, still even have flares?  

Although, as you see, I'm an intensely emotional person (I really struggle with this awful shame about this, which I do know is just useless and no help, and I do want to let go of it somehow)  But i also have a strong logical streak -- I like to have a certain amount of control, and i really have a need to know why something is happening, to have a decent idea of the cause behind the result.  

I'm sure I'll be figuring this out more day by day.  Last night's experience was truly terrifying (I haven't written out all the details because I actually don't want to go into it all again, it was horrible).  I can trust, I do hope, that I will learn what it means, to me, in my own life, to be so much more able to do things, to engage, to extend out into the world again, and to take care of myself.  But I'm realizing that this can't happen overnight.  A week ago, I was in so much pain that I could hardly stand up at all, much less walk.  I would creep to the bathroom, bent almost double in pain, totally unsteady on my feet. i was asking neighbors to bring me my mail, as I couldn't walk far enough to get it myself.  I spent by far the majority of almost all my days laying on my couch and reading.  That was all I could do.

So I have finally scored a break.  It does feel as if I have my life back, or more like the possiblity of a completely few, fresh life.  If this is real, and if it keep up, then I have a whole menu of options that I haven't had for most of my life.

So -- I know I'm repeating myself compulsively.  I'm very happy  And confused.  And scared.

If I don't just sound like a ungrateful self-indulgent psychotic, if you've ever felt anything like this, especially after sudden huge improvement from a biologic drug, would you be so kind as to write and tell me about it?  It would help so much.  Am I the only one who has ever had this happen?  Am I the only one who has ever felt scared of being miraculously better, and then tortured with shame about feeling that way?  Is there anyone else here who has had a big recovery and then just not quite know exactly how to go forward?

Sorry for writing so long.  I do that when I'm feeling shaky.  You all have already been so incredibly helpful to me.  So I'll thank you again in advance, from my possibly insane heart, for helping me figure this out and navigate my way through.

You are all such wonderful, kind, smart people, and I trust whatever you might have to say to me.  I really do need response and some guidance in figuring out to go forward, and to live with equlibium and calm.

All best to each and all of you,

Susan Noel (C.Jane)