Yesterday, Adahlia had her 20th blood transfusion. Just like last time, she was strong, observant, patient, and friendly. For the first time, she was able to walk around the transfusion center, which delighted the nurses, who spoke of how big she’s gotten, how they’ve seen her change over time, her being a regular fixture at the hospital and all. Adahlia received her first temporary tattoo on the back of the hand that didn’t have the IV – a ladybug (she loves bugs, points to them and says: “bah, bah” or “beh beh”). She tried several times to sneak behind the nurses station. She eagerly pulled me towards the play area. And it was another lucky transfusion in that she slept for a big chunk of it.

She also had a baseline hearing exam done, because we need to start her on iron chelation medication. (We need to monitor her vision and hearing, because the medication can cause damage to those senses, so we must be as must be as careful as possible.). She needs chelation. Her ferretin is at 650, her serum iron is at 176, and her % saturation of iron is 95%. Time to move.

The hearing exam was fun for all of us – it’s late at night, I need to rest, so I won’t go into it here. But it was interesting to see how they measure hearing in babies and toddlers, and actually pretty enjoyable.

So I recently got a new general practitioner, who immediately agreed to do autoimmune testing, after months of my urologist and nephrologist refusing, insisting: “you don’t have autoimmune disease. ”

Guess who has autoimmune disease?

This is one of those situations where you don’t actually want to be right. Do you know how maddening it is to have to insist on receiving testing for a disease you don’t even want to have? Oy vey.

So, I have been attacking my kidneys.

Ok, that’s news in a way, because it’s been confirmed by biomedicine, but it’s something we’ve suspected from the alternative and energy medicine side of the house for nearly a year now.

Focus:

What do I need to do to heal myself?

Rest, get deep sleep at night. (Sigh. Its been impossible to date. It is difficult, if not impossible, to get any quality sleep sharing a bed with Adahlia, especially when she is sick and tosses and turns all night. But how can I kick her out? As long as she’s breastfeeding, which she still does heavily, I doubt she’d go willingly. Considering how she practically sleeps on top of me, I doubt shed even be okay on a bed of her own, set up in the same room. And I do feel it helps her feel safe and loved, and is therefore helping her do better. At any rate, let’s get real here: bed sharing is not the root problem. Deeper, more restorative sleep is. I need to figure out how to get it, even though I have a baby.)

Reduce stress. (Ok , big root problem. A loss of nearly all my earnings and savings from my military service has had a huge impact on me. Going into debt to keep a stable roof and healthy food and bills paid has been very disheartening. It will be hard to climb out of this, and I know it. Especially if I am seriously ill, and can’t work. I feel derailed. It’s amazing how fast thousands of dollars of savings goes. And with it, your life. Money is energy, after all. It needs to flow, both ways. Mine had simply been depleted. And obviously, there’s Adahlia, and the stress of her blood disorder, which I need not elaborate on. If you’ve ever loved anything, you know its very hard to see it seriously sick. Even Joe and I’s relationship, which has been so special to me, is often yet another source of big stress. No easy fixes to any of the above. The stress exists. I will just have to figure out better ways to cope with it, or otherwise embrace an even greater zen outlook, an even deeper trust.)

Eliminate allergens in the diet: starting with gluten, dairy, soy, and corn. Get heavy metal testing. (We’ve eaten mostly organic, healthy fare for awhile now, but to go wheat and dairy, etc, free will be a challenge. I’ve even read that I should eliminate all animal protein. As a breastfeeding woman, I know that is not going to be easy… I’m always hungry as it is!!!)

Positive thinking, meditation, exercise, reiki, qigong, acupuncture, high quality herbs and supplements, and all the other healing techniques I know are also vital. (Most also require time and/or money.)

Sometimes, it’s just so overwhelming. I need an army of me to take care of me.

The point, however, is that though I thought we were already doing everything we could, we obviously aren’t, and I need to ante up. I need to commit further. Our lives depend on it.

And I need to keep breathing through all these stressors, reminding myself that I love myself and my life, that I am already everything I need to be. No matter what the external circumstance. No matter what it looks like, or appears to be, to the judgmental or arrogant or ignorant eye.

When I was little, I had a habit of losing things, like watches, or trinkets, and I got in lots of trouble for it. I simply could not keep track of stuff. I fretted over it, was scolded for it; but nothing really helped. I grew older, and gradually, as the years passed, I lost things less often. But I still, to this day, misplace and lose items, and very occasionally they are important or valuable, but usually they aren’t. It’s simply a quirk about me. I cannot express the relief I felt when I finally escaped the observant eye, and finally didn’t have someone hounding and criticizing me about it, when I did misplace an item.

Except I cannot escape my own eye, and it’s quite observant, indeed.

Hey, Erika: It’s okay to lose things.

Hey, Erika: It is just ebb and flow.

It is time to deeply love myself. To take the best possible care I can of myself and my baby. Time to ante up. Time to get fierce about it.

At all cost.