Tuesday, April 20, 2010

The Word List So Far

So here's the list of words the babeola is reading so far (all started this week)-I'm trying to keep track for her baby book:


And a valiant attempt at reading the word three but she doesn't really know her blends yet. I'm trying to figure out what to do on that front. Do I teach them to her or just let it go for now? But since she's trying for those words, I guess I should give her the tools???

I don't feel like I know the balance yet between meeting her where she's at vs. pushing. I don't want to push! It has to be organic from her or else I think it hurts her more than it helps. If that makes sense.

Things continue to be a medical mess of weirdness and no diagnoses and no treatment. Tests and more tests and lots of 'I don't knows' along with 'You should go to the ER.' I've been hearing both waaaaay too much.

But the babeola was beautifully behaved at the doctor's office today. As a treat, I took her to the mall where she rode the train, some rides, and romped in the playground. We capped the outing off with a handful of M&Ms from the candy vending bank.

Hopefully her childhood memories will be of trains and chocolate and not a sick mommy.

Friday, April 16, 2010


Today the babeola read the word zoo and phonically (phonetically?? which is it?) sounded out the word ten.

*blink* *blink*

I don't believe either word was something we 'worked' with her on although they've been in the text of various books we read. She just loves letters. It's her thing. We do lots of reading. She's learned to phonically/phonetically sound out frog with us. She puts letters together and sounds them out even though they're gibberish. The fact that she thinks to do this is just amazing to me.

I was an early and advanced reader, but not quite this soon.

Counting is 'behind' reading. She can count up to 4 objects reliably and will go as high as ten with some inconsistencies/errors.

She just amazes me sometimes. Her little brain is churning.

Friday, April 9, 2010

I Started a Patient Blog

I finally decided I had something to say consistently about being a sicko. Also, the prednisone is affecting my mood, sparking a lot of ranting. So I started a patient blog called Pissed Off Patient and I've been ranting over there non stop since yesterday.

Hopefully this means I will stop whining about my health here.

I am doing okay. I have been nebulizer free for 2 days. The coarse crackling not-a-real-wheeze-but-I-don't -know-what-else-to-call-it that has been irritating my airways, seems to finally be going away. I just can't seem to get my peak flow up to where it used to be and am wondering if this marks a permanent change.

Within the next few days, I hope to start becoming more physically active.

The babeola is so damn cute. I just want to eat her up. I need to come back and talk about her some more. She is such a gift. I am lucky to have her.

Wednesday, April 7, 2010

Hysterical White Female

Thank you for the lovely comment on my last post. Things are slowly improving here but I need to vent. This may not make much sense because I am really really upset.

I signed up for a weight management clinic because I decided I didn't want to lose weight alone. Fine. Well, unfortunately, while the doctor is nice enough, I have pushed his 'hysterical white female' button. I am an intense person, a creative thinker, a fast talker, am well read and I know that sometimes I 'hit' people wrong. It's a consistent issue. I also have 'bully pheremones'. People like to think they can dominate me through various power games, but fail because I am often smarter than their games (power games tend to have inherent logical flaws I have found), act with integrity, and stand up for myself.

So I had a follow up appointment yesterday. I wasn't sure if I was going to make it because my breathing has been dodgy still since I left the hospital. I am still using the nebulizer. Still wheezing. I'm better in that I don't need to go to the ER, but I'm not stable either.

I decided to go to the appointment because being on prednisone for a month is not going to help weight loss, I need all the help I can get. Got there and couldn't feel my knees. Just was really weak. Then I couldn't breathe well. Then I realized, I hadn't been breathing so hot all day, but had been ignoring it. Living in 'I'll be fine land'.

So I sit in the waiting room and enter 'the zone' where I'm just working on finding where I'm going to get my next breath. It's a delicate process. Breathe too deep and I make it worse. Breathe too shallow and I make it worse. I have to find the sweet spot between the constraints so that I don't completely lose control of my breathing.

I finally take my rescue inhaler which brings some minor relief, but by now it's too late. I'm getting tighter. Suddenly my chest and shoulder muscles feel so heavy and I can't lift my shoulders to breathe. At this point, I'm in the exam room waiting for the doctor and I realize I am in trouble. So I start to panic.

Panicking is never good. Don't ever panic. It makes things so much worse. I am usually so good about not panicking, but I had hit my limit.

So I had a bronchospasm and lost control of my breathing rate.

Apparently, however, I looked like a big faker????

Because next thing I know the weight loss doctor is trying to play mind games with me. "Do you want to have asthma? What if you could have something else?"

First, who the fuck asks someone to answer that kind of question without disclosing the something else? Because how do I know the something else isn't cancer, you know? Are we playing 'Make a Medical Diagnosis Deal' and I have to decide which door to open? Really?

So I say, "Well in my medical records is a pulmonary function test where my FEV1 is 70% of predicted."

He says "But you also have normal pulmonary function tests."

I just looked at him as I couldn't figure out what to say. What I should've said was "I have had pulmonary function tests when I'm healthy so yes there are normal ones. I was not symptomatic when those were performed so they would not have shown much." Because I suspect he's thinking I had those tests because I complained of being sick when, in fact, they were administered at every pulmonary visit for years regardless of how I felt. (And I hated them.)

I also should've pointed out he had access to my medical records and could have viewed my hospitalization records himself. I had documented drops in oxygen. I have scarring and now a growth in my lung. The xrays also showed airway constriction.

Basically, this jerk thinks I have a vocal cord problem which can mimic asthma and tends to have a psychological component. So you know, I'm making it up and his asking me if I wanted to have asthma or not was a psychological test to see if I was emotionally invested in being sick.

There is a power gradient in medicine that favors the doctor and it is easy for them to abuse. I am at the mercy of their education, intelligence and character--which all too often I have found lacking. To me, what happened yesterday was an abuse of this power. I felt manipulated and discounted. I hate feeling like I have no credibility or power and I feel threatened because this kind of stuff is when they start taking away medications or refusing to listen to me.

Now I don't know if I want to go back. I mean, I do want to go back and confront him on this, but do I want to continually subject myself to someone who thinks I'm a hysterical white female who just needs therapy????

No. Not really.

My husband is going to be coming with me to some upcoming appointments and I've appointed him my 'medical bouncer'. Because I am treated so much better by male physicians when there is another man in the room.

Wednesday, March 31, 2010

Thoughts on Hospitalization & Parenting with Chronic Illness

I recently spent the night in the hospital due to a severe asthma flare up. I did 5 days of prednisone at home (30mg), 6 days of 24/7 nebulizer treatments at home, slept upright for 10 days and was unable to break the asthma. I could literally feel the inflammation building back up in my lungs after nebulizer treatments--my lungs were insanely inflamed.

I did my best to stay out of the ER and hospital. I called my pulmonologist, she called me. We were doing everything we could.

But I ended up in the hospital anyway because I realized I could not breathe well enough to drive nor walk well enough to get navigate the medical building for an x-ray or even walk from x-ray to the doctor's office. I needed the ER's centralized care

The thing is, this is probably going to financially ruin us. Because there was some heart weirdness going on too and I got the full heart work up which is expensive.

Except we have insurance, right?

Yeah, insurance with a high high deductible. Insurance that, based on past behavior, is going to deny the claim so I'll have to fight them.

I hope health care reform brings some relief to this situation. It seems completely asinine to me that we work, we pay our premiums and we still are at risk of ending up destitute due to medical bills.

The other thing that I've been reflecting on is how illness impacts parenting. The babeola has been sick since January (although doing better within the last week or two) and now I've been sick for almost 2 weeks. Month after month of sick has take a toll on my parenting and the 'norms' of our relationship.

I was sad to see how readily the babeola cuddled with me and watched TV when she visited me in the hospital. Because that's how I've been parenting of late; letting her lay on me with the TV blaring while I try to sleep off the asthma. I was moved to tears that my daughter would find this normal--cuddling with a near comatose parent. Then when she was sick, I used TV to keep her entertained because she wasn't well enough for a lot of activity--she herself has been wheezing and had some nebulizer treatments.

Intellectually, I know this is not my fault and that I can only do what I can do. But this is also not how I want to parent nor is this how I want my daughter to experience me as a parent.

She now pretends to take the nebulizer with me which just makes me shudder in horror. This is not what I want to model as a parent; pill popping, nebulizer sucking, hospital stay parenting. That was never my goal and I feel like I'm swimming upstream to avoid this and failing.

This situation also feeds into whether or not we will or should have another child. I'm thinking no. I think I got really lucky to have the babeola, but between the expenses of caring for a child and now my medical expenses on top of that, I don't think we can justify it financially. Also, I feel like I need to be as healthy as I can be for the child I have, not compromising my health to have another. I don't know for sure what the future will bring, we will continue to pay to store our frozen embryos but I am thinking it is unlikely we will have more children. I am very sad about this as I had always aspired to have 2 kids. I also used to believe that my poor health could be overcome, but am realizing that is not going to be the case both physically and financially.

This was not my dream when I decided to become a parent and I need to come up with a paradigm that improves my parenting within the context of chronic illness.

Tuesday, March 16, 2010

Some Funnies and Other Toddler Developments

The other day the babeola solemnly told the hubby "Congratulations" after he responded to her question about what he was doing with "Going potty."

So the next time you pee, congratulations.

I had an exchange with her about getting ready to visit the preschool she'll be attending in the Fall. She proudly ran naked through the house and said, with a huge shit eater grin on her face, "I not copopitating, momma. I giving you hard time."

Copopitating in this case = cooperating. That was good for a chuckle.

We left her with the grandparents one afternoon so the hubby and I could go see a movie. While we were gone she told my parents she was "scared momma and daddy not come back."  I was kind of floored at her emotional intelligence and how articulate she was. The babeola? Blows my mind.

She can also read her name and just yesterday pointed to the word big and said 'that's big.' She has known all her letters and 98% of the phonic sounds for a while so I figured her for an early reader. Just not quite this early. Time will tell if she picks up any other words.

It makes me glad we got her into a multi-age classroom for preschool. I had already noticed she had a hard time relating to same-age peers and now I know she's going to need those older peers because her reading skills are going to be a few years ahead of everyone else.

On the down side, she's been sick for the last 8 weeks with one infection or another. Once quite seriously to the point she had her first breathing treatment and was bequeathed with an inhaler. Yep. Asthma is on the table. They won't give an official diagnosis until she's had several wheezing episodes, but seeing her get kicked in the teeth by serial infections tells me something is UP. I mean, she's sicker than me and I have the immune system of a gnat with full blown AIDs. It is really something to see anyone get sick, let alone my own daughter, while I stay healthy. I didn't know that was possible.

Last week she had a cold. Got over it only to start hacking again by Friday. It is really frustrating. I feel so bad for her. And of course, there are no meds for her aside from the inhaler so she just has to suffer. I just took her to the ped yesterday and all they could tell me was "she's not wheezing". Which great, but what I really want to know is how do we stop this madness? When will she be healthy for more than two days in a row? That's what I want to know!

Tuesday, March 9, 2010

Naughty and Nice

From Fall 2009

One thing that all new parents need to know is this: Children don't cooperate for pictures past a certain age.

We had a terrible time getting a good pic for the Xmas card. To the point that we used the one above with the caption... Hope your holiday is naughty and nice.

What follows is the 'nice' pic. It was the best pic we could get of her by the Xmas tree, an effort that spanned several days.

It was sheer desperation that led me to think pairing the two pics together would work as a Xmas card (many thanks to whoever coined the phrase 'naughty and nice' that saved me). I think we mailed our cards out on the 22nd of December in fact, that's how long I spent agonizing over this Xmas photo crap. But the card turned out cute and we actually got lots of compliments.