But what happens when your income puts you JUST over the income guidelines for assistance programs, and your budget exceeds your income? Most assistance programs won’t look at your budget if you exceed their income guidelines.

And check this out, too. In my condition, I am physically unable to care for my 20-month old for the most part. I shake when I pick her up, and I can’t suddenly stand up and dart across the room when she’s about to climb on the table. (My kitchen looks lovely, by the way, when I keep all the chairs lying down so she can’t use them to get herself up.) She’s perfectly normal and doing just what any toddler her age should do. But I can’t manage her.

I checked into programs for childcare assistance. Nothing exists for people who can’t care for their children due to a disability – unless they want to pay for private babysitting. There are plenty of programs to assist people if they need childcare so that the can work or go to school. But nothing for medical issues.

Wow. I know I’m not the only one sitting at home feeling like garbage because of my chemo, just wishing my toddler would nap all day. And I know I’m not the only one who can’t afford to have someone come play with my toddler and take her for a walk in the sunshine. I’m definitely not the only who really needs to just spend all day in bed letting my body heal itself.

But we can’t afford childcare. My baby’s father has to work so that we can pay the bills. I can’t work. One good thing here is that my baby effectively has an at-home mom. I’m counting down the months to potty-training and daycare. But then we have to worry about immune and sickness issues and what she might bring home to me. Ah, one day at a time.

So, I dream of free childcare. And when I’ve recovered from this challenge and put this all far behind me, I’m going to start a non-profit to gather funds to help people who are in this position right now. Let me know if you want to be a part of it.

I figured that I was just getting horribly out of shape. I basically had not worked out since summer of 2007, when my then-undiagnosed Lupus was giving me the arthritis of my life. Then being pregnant from August 2007 through March 2008, not a whole lot of working out there, especially being in so much pain and having so much difficulty moving. So in May 2009 when I noticed the weakness, I didn’t rush to the rheumatologist. I figured I’d wait until my next appointment with him at the beginning of July.

When I did make it to the doctor, we went through our regular things: how’s the reflux (still reflux-ing), how’s the sleep (still crappy between the prednisone and a baby who has no idea how to sleep for more than 90 minutes), how’s the joint pain (I’m getting used to it, but it’s worth it to keep the prednisone down and still nurse my baby), how’s the scleroderma (well, my face looks like I got botox!). Then when I told him about my physical difficulties, his eyes got really big. Not good.

Now, by training, I’m a clinical kinesiologist. I work on people’s muscles and I know how to test every muscle in the body to see if it activates properly. So when my doctor put me on the table and started testing my quads and shoulder girdle muscles, I could immediately tell what was going on. My legs and shoulders were failing me, and I was having trouble identifying the nerve response to even activate a trigger in the tendon to move the muscle.

My rheumatologist immediately ordered a blood test for an enzyme called CPK. CPK is creatine phosphokinase or phospho-creatine kinase. CPK is an important enzyme in many tissus, especially skeletal muscle tissue. Clinically, doctors look at its level in your blood to determine myocardial infarctions (heart attacks), rhabdomyolysis (severe muscle breakdown), muscular dystrophy and acute renal failure. A woman my age and weight should have a CPK of 0-180. Mine was 3500.

Even before my bloodwork came back, my doctor informed me that I had polymyositis. I guess that the degree of my muscle weakness combined with my other autoimmune disorders gave him the confidence. He explained to me that polymyositis is an extrememly rare AI disorder that attacks the muscles in your body. It starts with what are called your proximal muscles, which are the large muscles connected to your torso: quads, hip extensors, shoulder girdle. Check that, I was definitely experiencing those muscles going. All those past months, I figured I was having trouble lifting my baby because my joint pain was so bad. Apparently I was losing muscle. He told me that the next muscles to go would be my neck flexors, and the swallowing muscles. Then the disease would progress inward to my diaphragmatic muscles.

He sat in front of me and said, “Don’t get me wrong. What I’m about to tell you, I intend to scare you to death. I have seen patients in your condition, and if we don’t do something drastic right now, you’ll be in the hospital on a respirator in 4 weeks.” Wow. OK. Guess it’s time to wean the baby.

The next day I sent my 15-month-old daughter to my sister’s for a crash wean. We amped my prednisone from 5 mg/dy to 60. I didn’t sleep, and apparently my daughter didn’t either. She was such a good sport: never away from mom and dad, nor the breast, and suddenly in a new place with new people and none of her normal comforts. My little sweetheart. That was so hard to do, and I didn’t want to be taking care of her from a hospital room with a tube down my throat.

That was a really difficult week, although I have to admit it was really nice having the break. Unfortunately, I didn’t get extra sleep because of the prednisone. And thus began my search for the perfect sleep aid. I had officially boarded the roller-coaster of taking one drug to counteract another. And me, an alternative medicine healer who avoids anything that doesn’t come straight from a plant! This was not what I had planned.

By the way, ativan rocks. I went through about 5 different sleep meds, and that’s the only one that will keep me asleep for more than 4 hours. And then I can take another one! Woo hoo!

When we went to pick my daughter up, it took her at least 10 minutes to come to me or her father. She clung to my sister and acted as if she didn’t know us. Fortunately for me, she’s child #3, so I understood that she might well not have recognized us. But for her father, it was devastating. She’s his first child, and it crushed him. He was convinced that the wean damaged her, although we both knew that we really had no choice. The levels of prednisone that I was on would surely have reached her through the breastmilk, and that just wasn’t acceptable.

We took her home, and immediately noticed that she had developed a new sound to her cry. It was plaintive, sad, desperate. When she saw me naked, she wanted to nurse. I was able to distract her, and then made sure that she wouldn’t see me naked. Even now, 5 months later, when she sees my breasts, she has to come give them a kiss. I don’t think she remembers nursing, but she does seem to remember that there was something sweet and special about mommy’s boobs.

So did it damage her? Well, since as a shamanic practitioner I do soul work and can see soul damage in people, I have to say yes, she suffered some soul loss during that week away. And thankfully her father and I are trained to retrieve and repair that type of injury. It took several weeks for her to settle back in, but the cry remains. I do believe that if left to her own development course, she would have nursed to 2 1/2 or 3 years. I do feel we cut her short. AND I feel that she has recovered. But we’ve done alot of shamanic healing on her. My first son never got that healing when I had to wean him at 6 months so that I could take anti-depressants. I still see soul injuries there, and he’s 13 now. Someday maybe I’ll get permission to go heal those wounds.

I’m battling four different auto-immune disorders right now. They all fall under the umbrella of Mixed Connective Tissue Disease. At least that’s what my research shows. At any rate, I have Lupus trying to lock all my joints, Scleroderma trying to harden all my skin, and Polymyositis trying to eat away my muscles. So where’s my Up Cell?

If the Universe is so hell-bent on breaking me down to my constituent parts, then I must be in store for an upgrade.