Saturday, May 7, 2011


I was going to write a post in March about how it's my least favourite month and how it was surprisingly good and give a big, earthly squeeze to my little lost girls, but somehow the month disappeared. And April too.

The 15th of April marked my brother's birthday and my 4 year (!!!!) anniversary of being on the steroid Prednisone. I owe it a lot and struggle with it a lot. I'm heavier, hairier, balder, smarter, wiser and happier than I was 4 years ago. But it still stung a lot because to me, there was this life BI, before illness, and the life I lead now, AI, after illness.

I guess I'm thankful that I'm not ravaged by the active disease the was I was then. Small graces and all that. But I still have swollen, sore joints and I still get the fevers, the ulcers and the flares of worse arthritis.

I had considered going back on Methotrexate, something I wanted to discuss with my Rheum, but never got to it with the registrar. My amazing GP said he'd go out on the line and prescribe it for me, but he just didn't think it'd be worth it. The risk to him, of course, is large, and the risk to me, as well, is large. And we agreed they were risks not worth taking.

So, I balance my life with a lot of NSAID usage, which is in addition to the other analgesics and the steroid. It's a lot to put in and frankly, I don't do enough to support my body. I should be eating a raw juice diet to help flush those chemicals out but I don't. Can't be bothered cleaning the darn thing and with petrol prices the way they are, food is expensive.

Much more than it was 4 years ago when I went on a raw juice diet for months at a time. I was also on the anti-malarial drug Plaquenil, which meant I couldn't keep solid food down. The plaquinel made me feel so exhausted.

I actually started wondering if I were taking a bad combo of drugs because I've been to that Plaquinel exhausted feeling a few times over the past few weeks.

I recently had a messageboard discussion regarding dreaming, in which I asked if we could temporarily stop dreaming. I've been having weeks of poor sleep because of these very vivid, often lucid, dreams about bad things happening to people I know. I would wake up in cold, hostile terror and then feel powerless and horrid for hours afterwards.

The decision was made that one cannot stop themselves dreaming, but perhaps one could control turning the 'bad' dreams off.

Someone suggested that I wasn't dealing with something in my life and that guilt/ownership was causing the 'bad' part of the dreams. I was then told to begin seeking POSITIVE thoughts and I'd see a change in my life.

I said that while I am actually a fairly optimistic person, compared to say 4 years ago!, I deal with a lot physically and I think the only 'guilt' I could come up with is worrying I'm not doing *enough*. But, I said, I think ALL women face the Enough Dilemma. Am I doing enough for him, for her, for them, and myself?

I mentioned that it's arthritis that I have and boy, did that open a can of worms.

I don't have a disease, they said. No, no. It's dis-ease about my life. And, by the way, had I heard about THE SECRET?

That's where I stopped the conversation and remarked that I don't believe in THE SECRET because I've had a lot of crappy things happen in my life that I didn't ask to, so I'm not one to believe that by thinking about something it's going to happen.

Did I have so many miscarriages before Sophie because I took NSAIDs for pelvic pain and poisoned myself, because I have some sort of huge autoimmune thing, or because I wasn't projecting an image of myself loving motherhood?

I used to think any and all of that, in a sort of roundabout way. I thought that BECAUSE so much bad had happened to me in such a short time, that LIFE was about to bring me ALL this bounty. I was going to rewarded for my patience.

Only, it didn't happen.

A lot. Of Waiting. Went By. A LOT.

I started to get cross. And impatient and angry. Lots of angry.

And I became a really ugly person. I was mean and desperate and completely 100% out of control within myself.

I used to dream, day-dream, and write down all these wonderful things that were going to happen. X would decide this and we'd go Y. And they were ALL SO HAPPY. I drew picture and I wrote poems about these bountiful rewards that were coming.

And they didn't come.

My babies still died. My cat almost died. My husband left. And Sophie's still sick.


What the hell?

And that's when I started to throw away all those lists and dreams and pictures. I used to wish for things whenever the clock would read 12:34 or 1:11 or 11:11. ALWAYS. I'd always wish for something in my lists.

And then I started seeing those times and being THANKFUL for what I have. I have a pretty amazing life, actually. I have awesome friends, who I don't get to see all that often, and I owe them more time. I have an amazing child who is the most creative, brilliant, spirited and sensitive creature I've ever met. And, most of all, I have a wonderful partner.

The same one. A ton of people, all in a matter of 72 hours or so, started asking me about Matt. And I don't actually know what to say. Things are good. We are enjoying each other. We're enjoying being a family. He was so brave to leave and put me on a path to health. I am so thankful for him.

I no longer hate my cold house. I see it as a wonderful home to our tribe. It's cold, yes, but it's weathered gales and sleet, hail and me. We have a huge reserve next door for the boys and it's cluttered. Cluttered but loved.

6 weeks ago I stopped biting my nails. A small blip in the meaning of life, but, for me, it's been huge. I beat that anxiety. I found some calm, some peace, in the fluster of life. I also attempted to give myself a fancy French Manicure but wow, it looks awful. I wear my awful with pride.

I applied for a scholarship to have a 2 year degree in Birth Education and Teaching paid for. I worked on it, got 2 fab references and faxed it in. Well, Matt faxed it in, for I am aloof with technology.

And I didn't get it. And I felt sad, but it didn't absolutely derail my life. I embraced that feeling of sadness, told myself I'm going to have to write a really stellar application to the university (and the loan people!!) and try again. I'm actually sort of happy I didn't get it, because you had to promise 2 years full-time study and I couldn't do that.

It was something I really wanted, though. But it didn't destroy me the way it would have last year, or any other year in my life. But, would it have come to me if I had drawn pictures and written stories and poems about it happening? Or is weighing down life with so much expectation just a barrier to real happiness?

I feel more at peace within myself and with G-d. My dear friends know I began to feel like G-d was punishing me, subjecting me to the 3 D&Cs and the autoimmune disease. I felt hated and unlovable. Marked. A Sinner beyond repair.

When they told me it was a genetic defect, a genetic disease, I began to feel maybe there was something really wrong with me. It was even in my genes. I truly was marked. A burden. And with uncontrolled pain, that darkness and pain just ate into me.

And I don't feel that now. I pray. All the day. Moment by moment sometimes, in especially trying 5.5 year old situations. But my prayers aren't so needy now. They're more: Dear Lord, thanks for the sunshine today. It means she can go run around. VS the Dear Lord, please make it stop raining because I can't take 15 more minutes.

I know some people don't rely on faith the way that I do. I actually denounced G-d to myself following the twin loss. Because, if there was a G-d, why was this happening? But, as they do in 12-step programemes, I had to make room for faith and let it back in. And, over 4 years, it's worked its way back in.

I had to admit to myself, and to the world, that I am a co-dependent. I had only ever heard the word used in association with wives who bought their alcoholic husbands alcohol. I didn't know much about it. But I came across a study about children from bad backgrounds and found that co-dependence is a side-effect of abuse.

Children who grow up with/in/perpetrating violence are/will/maybe/grow up to become co-dependents. And that fantasy is one hallmark of the condition. All those stories and pictures and poems. I was living my life in fantasy to avoid what was really happening, hoping for this mystical Bounty I was to receive that was going to fix everything.

Trust me, it was a bit of a mindfuck.

And I fell apart at the feet of my counselor. And session by session we tackled the ugly crap that triggered the anger. Piece by ugly piece.

There are still more pieces. I always think of a new one and think, oh damn. Why am I not seeing Beverly anymore!? (She's too booked!)

Pia Mellody is THE groundbreaking thinker in the area of Co-Dependence. I have watched all I can find of her and her lectures are hard. They can feel cruel, but they are honest and to the point. (

Pia realized that hundreds of people had passed through her office at The Meadows with stories very similar to her own. For one thing, a large majority had been abandoned, abused and neglected as children. Pia had long suspected that her own symptoms stemmed from her traumatic childhood and severely dysfunctional family system.

As Pia interviewed person after person, a unique and clear pattern emerged. All had five similar symptoms:

They had little to no self-esteem, often manifested in the carried shame of their primary caregivers;
They had severe boundary issues;
They were unsure of their own reality;
They were unable to identify their needs and wants;
They had difficulty with moderation.

These symptoms together marked an extreme level of immaturity and a level of moral and spiritual emptiness or bankruptcy...

Pia also showed how codependents carry their abusive caretakers’ feelings. Our natural feelings can never hurt or overwhelm us; their purpose is to aid our wholeness. “Carried” feelings lead to rage, panic, unboundaried curiosity, dire depression, shame as worthlessness or shamelessness, and joy as irresponsible childishness.

I began reading her books and at one point she asked which OCD habit you actively engage yourself in? I have many, but one that seemed the most easily altered was nail biting. And I told myself that if I could read her book and get through it alive, I could stop biting my nails.

Now I have proof in the dog-eared book and fancy/ugly French manicure.

I had to own up the realisation that I wanted other people to fix my problems because I was too scared to fix them myself. I wanted other people to make me happy because I didn't feel the things I enjoyed were worthwhile and I wanted them to like me so much I'd rather enjoy what they wanted. I was immature and angry and hateful and fat and overwhelmed by being angry and hateful and immature and fat and was just a big, ugly toad. I wanted to rage and hate and hurt and still be loved despite it all. And it was childish to think and do so.

I'd like to think things are much, much better. A better, realistic, no-fantasy, no intensity-ridden better. Baby steps, as offered by Dr. Leo Martin in What About Bob?. Baby Steps.

It's been 14 months of recovery for me. I envision 30 more years of recovery, to be honest. Painful, not perfect, less intense, less fantasy-filled 30 years.

Now I need to write my Mother's Day Post.



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