Getting There

I'm down to 2.5 mg. It just seemed like I needed to taper a bit faster. My body shifted gears to feeling like I had too much steroid rather quickly.

I never know if I'm right until it's done, but I'm about 95% accurate when I change the dose.

Of course, tapering makes me tired, but not tapering was not working either.

I've been sleeping a lot.

Dreaming of exercise.

Sometimes I try to work. I have several stories I'd like to finish, but my brain is still not quite synapsing normally due to the fatigue. It takes a super human effort for me to write even 500 words that are worthy of publication.

I think this time next week, I should feel like I'm past the worst of it. But I could be wrong.

Meanwhile, I'm sucking down my first Coke Zero in a month to see if it'll help crank me up. So far, it's not working.

The toddler had a lovely play date with a bunch of other kids. Perfect behavior. It was nice to see because I think every parent worries that one bad interaction means big problems. I know she's a good kid. I know we get a lot of the big things right as parents, but there has been such conflict with the neighborhood kids. But I don't think their parents are as attentive as they could be to their kids' social skills.

I don't like our neighborhood anymore. The housing market crash has changed the demographics quite a bit. Ideally we would move to another school district. One where parents pay more attention to their kids than their cigarettes. But I'm not sure that will happen.

You know, smoking has been such an issue--I think we're the only non-smoking parents on our street--that I want to find an asthma commune. I'm tired of having to awkwardly bow out of social gatherings because I can't handle the smoke.

Also, I am starting to think there really is a correlation between smoking and parenting. I have not found it to be a positive one.

I'm sure there are great parents out there who smoke, but I'm not living next to any of them.

Tireder with Extra Bitchiness

Sunday was not a rousing success, but, as is so often the case, you get one good day followed by a not so good day. So really it's all normal, right?

The bitchy part I wrote originally has been deleted. Let's all imagine sunshine and rainbows now! Your choice if it's after the apocalypse that destroys all the people you can't stand or after the aliens come and give us the key to world peace and leave us all singing kum-by-ya (or however the hell you spell it) in a round.

Please Just Stop Already

I still can't breathe.

But there's nothing I can do about it.

I hate the fact that I'm on my own as a parent right now. I've called in family and sitters to help so I can rest. But I wish we had cancelled the hubby's trip. I thought I would be fiiiine though. Instead I'm no better than I was yesterday and I'm using the nebulizer and taking steroids--I'm not playing around.

Took the toddler to the park twice today. I can't push her on the swing, can't walk around the duck pond and it's hard for her to understand WTF is wrong with mommy.

It's frustrating.

Being Mommy never stops.

Being sick never stops.

It's impossible for me and unfair to her.

Toddler Fall Kickoff

The toddler is in the basement* with a roll of blue painter's tape, doing God knows what, and I don't care. I blame the anesthesia fog. Benadryl lingers for a long time in my system. There's a reason I only take one Tylenol PM or one Nyquil or half a child's dose of Benadryl. 100 mg of Benadryl? Was a lot for me.

Things are getting busy here. Real busy.Preschool is about to start. The toddler has a seriously overbooked schedule, if you ask me. Not one extra-curricular. Just school and OT/PT. Between those two things, she's got something every day of the week.

I think I'll hold off on dance class etc... until January. Just to give us some time to adjust.

The week breaks down like so:

Monday: Early Intervention OT

Tuesday: Preschool, alternate weeks private OT/Zumba

Wednesday: Preschool, PT on alternate weeks

Thursday: Preschool, Zumba

Friday: Early Intervention Specialist home visit

I'm glad I feel better. There's no way I could have done this schedule last year. I'm a little worried about being up for it even now that I'm off steroids. I still sometimes have a mini crash after busy days.

(If it doesn't look like much to you, keep in mind I'm working, cooking, cleaning, plus driving the toddler to all her various appointments as well as my own. It's not like we have OT on Monday and are done for the day. I wish!)

Anyway, I hope this will be the last year of PT and maybe OT. Of course, today alone she's had three falls. Two with the PT and one down the stairs here at home. Poor bean. The PT thinks her low tone makes her move too fast and she tries to beat gravity and loses. I'm not sure that makes sense, but it's nice to have a theory.

The other day she tripped and the hubby caught her around her upper arm. Then we panicked about whether or not her arm would bruise.

When she was just shy of 2, she fell on the stairs. I caught her as I was right there, keeping an eye on her. She was suspended from my hands for a bit and had finger tip shaped bruises on one forearm as a result.

We are always afraid people will make the wrong assumption about those kinds of bruises.

It doesn't happen often, but when it does, we dither about what she will wear to cover them.

Then we feel weird because all we are doing is catching her when she falls and saving her from a more serious injury.

But it's just so easy for people to assume the worst, you know?


*Finished and child-proofed. It's more about what she's going to do to the basement than what it's going to do to her.

Foggy with a Chance of Fog

I do not understand drug addiction. Demerol, Versed et. al? Made me sleepy and that was about it. If the definition of high is sleeping all day and trying to push thoughts through cotton, then I'm unimpressed.

If you want to be tired and foggy on the cheap, about $20 of prednisone would mess you up for months. Just FYI for those addicts on a budget. Although the moon face and buffalo hump that comes with steroid use are probably why it has never caught on.

Today we are having what I call a 'pajama day' which is code for 'cartoons, as much as the toddler can stand to watch'. Just slowly easing into things whilst detoxing from all the drugs.

Sleep was, ironically, hard to come by last night. They said my throat would be sore, like a cold. In reality, it feels like my throat has been in a fight. The soreness is one of physical battering. I swear I can still feel the scope in my throat and the memory of choking comes with that sensation, which made sleep even harder to come by.

The toddler bag I packed kept her busy. The hubby could have left, as it turns out, and come back later, but they poked around the hospital instead. They had breakfast in the cafeteria and played with everything in the bag. Now that we're home, she's been hoisting it on her shoulders and lugging it around, clearly enamored.

I'm glad I wrote down the contents, so I know what to pack next time.

My weight continues to annoy me. At the moment, I'm gaining weight even though I haven't eaten since Monday (don't worry, I've got chicken roasting in the oven right now). I've decided it must be some residual adrenal crap. Not eating, for me, is adrenal. I don't have any other symptoms and I don't think an updose is necessary, but the complete lack of appetite is not normal.

I'm going to tweak my diet a bit, tweak the supplements, continue to exercise, force feed myself as much as I can and not worry about it. Hopefully if I keep doing the right things, it will even out.

Now to just shake the vestiges of drugs, sleeping too much, not being able to sleep at all and get on with things.

ETA: The hubby felt bad for me and kept trying to take care of me as if I was sick. He was angry on my behalf about everything yesterday. In case anyone feels the same way...I'm not angry and I'm not sick. I'm not looking for sympathy either. I don't need it. I'm fine, but it was a definitely an experience, which is why I'm talking about it at all. I've essentially been banned from Twilight anesthesia and told I shouldn't have it again. That doesn't happen everyday.

Packing for the Doctor's Office

Tomorrow is the upper GI endoscopy. Hubby and the toddler will be my ride and have to stay on the premises as a result.

Ergo, I find myself tonight packing a bag of things-to-do and snacks to keep her busy.

In her bag:

-prunes
-dark chocolate
-low sugar juice
-play laptop
-portable magic brite
-books to read
-workbooks to do for OT goals (dot-to-dot, coloring, mazes)
-crayons (a brand new box)
-Brainquest card deck

Hopefully that will keep her busy and the hubby sane for the 3 hours they'll be stuck waiting for me.

I am nervous. My first endoscopy ever, I woke up with the tube down my stomach still. When you're doped up and your body decides to ignite the fight-or-flight response because it thinks you are choking to death, nothing a doctor says can calm you down. You are beyond words.

Now that I think about it, there have been consistent problems with...what is it called? Twilight? anesthesia.

-They couldn't get me to sleep during the wrist surgery. (For good reason. I was fighting it as they'd botched the nerve block and I was afraid, rightfully so, it would wear off in the middle of surgery. It did. I ended up with general anesthesia).

-I woke up during the first endoscopy.

-I required extra anesthesia for IVF egg retrieval because of the pain (OHSS and swollen ovaries are not comfortable.)

The first experience with the endoscopy was bad enough that I begged the doctor to be sure I didn't wake up for the second one. That was the only time I didn't have a problem.

So I told this GI doc about the whole waking up thing and they just nodded dismissively. That doesn't mean they weren't listening, just that they looked like they weren't. Maybe it will be fine.

But I'm nervous. Partly because that kind of panic sucks. Partly because I don't know if my stress response is intact enough for that. I think it could be, but I don't know and I'm not really interested in finding out the hard way.

Parenting With Chronic Illness: Skip the Birthday Parties

Single parenting week has been kicked off with a bang followed by copious whimpering on my part.

First up, the toddler's first swimming lesson. Which she managed well.

The weather, though, was another story. It's whatever you call colder than frigid. The wind kicked up tornadoes of ice crystals that invaded my lungs and drummed in my ear.

Just the other day I was telling someone, asthma is like drag on a car. Sure, you can probably get a Porsche up to 90 even with a parachute snagging wind behind it, but not without making the engine work a whole lot harder. I may outwardly appear to be 100% a-okay, but it takes more out of me to do regular stuff compared to normally lunged people.

And I feel it.

Especially when the winter wind pythons through my lungs.

Or when I walk into a birthday party for a 4 year old and see they have cats.

Because I didn't think to ask.

At least they weren't smokers. Thank Gawd.

This was my first birthday party with the toddler. The very first one, I worked so hubby handled it. The second, the older neighbor girls took her and left us alone for a blissful 3 hours--see also heaven for parents.

This party was quite the rude awakening.

One, I need to remember to ASK about the environment I've been invited to. I am still not used to how vigilant I need to be now. I'm working on 'old asthma time', when it really didn't matter and any fallout was minor.

Two, children's birthday parties are horrible evil things that are best avoided. The toddler was run over by the older kids (all boys who seemed to all have ADHD or a serious Red Bull habit) and the younger kids were all refusing to share. There was crying. Squabbling. Boo-boos. Two hours in, they still hadn't served the cake* and the toddler was not coping well with the all around lack of sharing (day two of no nap did not help).

As a parent, I was stuck in the delicate position of not parenting other people's kids but also trying to ensure no one's kids killed mine.

I pulled the plug and left. Too Lord of the Flies for us.

By the time we walked out, I felt like I'd been worked over by Mike Tyson and a familiar ache started to throb in my mid back until my limbs turned to lead. Way too much stress.

From here on out, Daddy has to do this birthday crap. I can't hack it. Maybe someday if I ever kick my steroid habit, but now? It's just asking for trouble.


*For those of you without kids, this is excessively long for a birthday party. My goal is always to have the entire thing done in 2 hours; food, cake, games, gifts. If people want to stay past that, fine, but they aren't held hostage because the cake hasn't been served yet.

Responding to Comments

1. Anand:Yes, I am essentially paleo. That's kind of what low carb is, paleo. There are variations within low carb of which foods are allowed and which aren't, but all on the same spectrum. I have not found dairy to be a problem for me, although all I eat is cheese and some butter. Grains are almost completely out of the picture, I get some incidental exposure since everyone else here eats them.

2.Penelope: Parenting is the hardest job you'll ever love. If coping with chronic illness is central to a person's life, then it's awfully hard to fit in a kid. I would not want to have an infant right now with the way my health is, because I can't walk away or ignore the health issues I'm dealing with and infants have infinitely expanding needs.

There are no naps with infants. Or really any sleep at all. I can't imagine adrenal insufficiency in that context. Toddlers make it a little easier. Although every kid is different.

And I would add even once the diapers stop and the nursing stops, kids still need an extra $150-$300 a month for clothes, classes, shoes and other necessities. The financial impact of children combined with chronic illness in the face of health care reform in the US is serious and must be addressed prior to conception for everyone's sake.

Our insurance next year is self pay for the first $5,000 on top of the premium.

Who can afford children and medical care with that kind of health care plan?

No one I know, including us.

For your situation, with a traveling spouse, he either needs to shift gears in his career to be home more or you guys have to build up 5 years worth of savings for maid service and a nanny. Money buys you sleep. Time to be sick. Time to care for your needs. It allows him to come home and decompress without being instantly forced to provide a break for mommy. Money = improved quality of life. Alternately, a strong close knit, extended family works just as well, if you have one. We do not.

3.Have Myelin: Grace and humor would be nice, although truth be told, I'm much too cranky right now for either. The signature of the current virus is essentially losing your mind with bitchiness right before the boogies hit. Last night, the hubby was like "Why am I acting like such a jerk? I'm sorry." and I told him "The green boogies of death are coming for you. It's how it hit all of us, big time bitchiness first, boogies later."

On top of that, I am a realist and I am not going to romanticize early parenthood because that just sets people up for failure. I was so happy to have my daughter, but it was still, as you know, a huge change in our lives. It's hard to explain to people who don't have kids how much your life changes once you become a family but I try.

4.Hey Mo, thanks for the support as always. Yes, it's amazing how much dosing needs change with stress and illness. Thanks for the link.

Answering Reader Questions: Pregnancy, Why I'm Tapering Steroids

So people have asked questions in the comments of other posts, here are my answers...

QUESTION 1 (this is kind of long fyi)

Penelope wants to know what I think about pregnancy and chronic illness. My answer?

Hell if I know.

Here's the thing, where I am health-wise today is not where I was when I got pregnant. Yes, I was dealing with chronic illness and some severe side effects of fertility treatments back then, but it was different. I was much more functional day-to-day.

And pregnancy was a joyous breeze after what I went through to get pregnant. I savored every second of it, easily the happiest time of my life.

Also, because so much of my health stuff is hormonally driven, the supplemental hormones I was prescribed and the hormonal impact of pregnancy were very positive. It was almost like a cure. I felt freaking fantastic.

Now, the first 1.5 years of motherhood? Were a whole new level of hell by comparison.

Guess what?

I do not do well without sleep.

My baby girl never slept. Didn't even start to nap until around 16 months. Didn't sleep through the night on a regular basis until sometime closer to 2. (We tried everything including the evil crying-it-out method.)

And my daughter was constantly sick once I put her in daycare. Out of 10 weeks in daycare, she missed 5 due to illness.

She has my immune system poor thing.

After 3 days of no sleep and the daycare stomach flu from hell that gave me black eyes from puking for 8 hours straight, I quit my job. I had a great boss (for once), was on the cusp of a huge promotion (which would've involved a ton of international travel, so not very family friendly) and I walked away.

Even though the longer I am at home, the more and more it becomes clear that we cannot survive without me making a full-time income.

So here's what little advice I have.

1. Money. You need lots of money. Not just for medical expenses either. Money buys a part-time nanny who can give you a break to sleep or time to be sick. If you can't figure out how to save money for both baby and for medical care, you can't afford a kid even if your health is cooperative on the conception front.

Save, save save. This is the time to get a second job and save money. We kind of have an excuse because we used all our savings and then some to even get pregnant. We didn't go into debt for infertility but it left us penniless just the same.

2.More money to buy the best quality food you can afford. You may not do organic now, but when your little bundle of joy shows up, you will. Did you know that food prices are increasing at a faster rate than stocks can appreciate? Food costs are the number one thing we struggle with in our budget.

FYI Diapers will cost you between $2,000 to $3,000 over three years even if you use cloth. Pull ups are even more.

Diapers and formula require at least $150 to $200 monthly. If you breastfeed (which I hope is possible for you) it still costs that much between the pump and the milk storage supplies. Whoever said breastfeeding is free needs to have duct tape across their mouth. They lied.

3. A good support system. Who will watch the baby when you need to go to the ER or hospital? You need child care for doctor visits too because at some point, your baby will be too disruptive or outright traumatized by what they see. As I've mentioned in previous posts, the toddler went through a phase where she was convinced they were hurting me with the blood pressure cuff.

It is very lonely to go to the ER by yourself because your spouse has to stay home to provide child care. If you rely on your spouse to be your advocate, you may need to find a new advocate. In the early years, unless you are blessed with a wonderful network of close friends and family, you won't want to leave your baby with anyone but a parent as much as possible. So hello new ER buddy.

4. No job. If your chronic illness is relentless, there everyday, then yeah, you are going to struggle with parenting and working. One of them will have to go and it's much harder to give up your kids than a job. I do work part-time but have lost business and income as my health waxes and wanes. My income is not reliable as a result.

The one exception I can think of to this is if your illness doesn't care about daycare germs. If you can get a cold or the stomach flu and it's no biggie, then you might be able to handle working. I can't take the daycare germs.

5.Be absolutely sure your health issues are not genetic. As I've written before, I thought I could handle a kid with asthma. The guilt I feel now that the theory is reality is a huge sucker punch I never saw coming. I blame myself and feel like I have hurt my daughter with the best intentions--an awful feeling to live with.

6.There are no guarantees. You can do your best, be overly anal and responsible and it can still fall apart. If I knew then what I know now, I may not have gone forward with IVF. I had no idea the asthma would ever get so bad, that I would ever be dealing with SAI again.

This is the ride that is life. No matter how tight the seat belt, you can still get whiplash.

As far as parenting while sick.

1.PBS as co-parent. There will be lots of TV. More than you want. More than experts say is good for kids. We were TV free until January of this year. Now we watch daily, although we've cut back a lot since neither the toddler nor I are so sick any more.

2.Outsource. Sign up for classes and other experiences that the healthy parent can attend with the kids. These provide good stimulation for kids with parents too sick to do much more than the basics. It also gives you a break.

We hired the neighbor girls, for example, to come over twice a week and play with the toddler. I sent her to Gymboree classes with Daddy on the weekend. That kind of stuff.

OH and it goes without saying that you need a spouse who is up for cooking, doing dishes, laundry, diaper changes, midnight feedings. You need a full partner. If your relationship is very traditional, it's going to hurt when you have kids and good luck staying married through the resentment you are going to feel.

3. Work with your capabilities not against them. So, if you are barely able to function, don't try to play soccer. Instead snuggle up in bed and watch PBS shows. When I was acutely ill, just before I ended up in the hospital, the toddler watched PBS while sitting on me for a week straight. I would lay on the couch, she would use my stomach like a chair and we only moved if it was time to eat or pee.

Whenever she sought attention, I responded with hugs which gave her what she needed without me pushing myself to play with her more than I could. This worked remarkably well.

When I am better, but still not up for anything intense, we read books, build towers, paint pictures. Very sedentary stuff.

As she gets older, having neighbor kids her age and older girls (who like little kids as a general rule and make great mother's helpers) means I can have people over to play while I rest on the couch. The tween girls across the street actually come over to our house almost every Friday and host a craft night with the toddlers from the neighborhood. I provide snacks and some financial support, we don't hear a peep from anyone for about 2 hours.

4. Babyproof the sh*t out of your house. We turned our living room in to one big play pen. I could pee or eat or cook or rest as needed without worrying about the baby's safety. This is HUGE and the value of which many parents underestimate, whether sick or not. Not only is life less stressful, you can rest because you know it's safe for baby. Peace of mind is priceless and you get it with babyproofing.

That's about all I can think of parenting with chronic illness-wise. If you have any other questions, let me know.

QUESTION 2

Ezekiel wants to know why I am tapering. This is an easy question. In theory, my secondary adrenal insufficiency (SAI) is temporary, a result of steroids as opposed to an internal breakdown of the pituitary.

However, given how long my body's version of SAI lasts and how one time it went untreated (got better by just dumb luck, the asthma kept me in steroids and it all just evened out on its own) and how long treatment was delayed this time (adrenals felt like they were on fire and I have a lot more of the serious adrenal symptoms than I ever had before) I kind of wonder what is going on with my pituitary.

So I wean with the faith that my adrenals will come back. However, I've had continual problems staying off steroids and weaning once I'm on them. So time will tell. If this taper doesn't go well, I need to go back to the endo and determine if, this time, the SAI is permanent.

Things Fall Apart

Well I feel like crap, how about you?

And this is the second time I'm writing this post because my computer decided to do an update without telling me.

Irked does not quite describe it.

So I'm not sure what is wrong with me. Ever since I did that running interval workout last week, I haven't felt great. Lost my appetite. Very tired.

Feeling like the adrenals are pooping out on me.

I upped the Pulmicort, which I've been slowly tapering, but that didn't help.

I may have compounded things by manipulating the pill schedule. (Sue me, I want to go on my vacation, not send my PMSing alter ego.)

But is it possible, I can't tolerate the physical stress from that kind of workout?

My other big concern, the toddler starts preschool soon and you know what that means.

Germs.

Not just any germs. No, we are talking bad ass kung fu kamikaze germs. If you have kids you know what I am talking about.If you don't have kids, count yourself lucky in that respect.

When I was in the ER in March and the Pulmonology Grand High Poo Bah came down to see me, I was struck by what he said about his family. His wife has asthma. She and the kids were homebound in the early years trying to dodge the germs. She couldn't work and they avoided other kids.

Sadly, I can relate. We have talked about me going back to a 'regular' job but I can't quite get around the fact that one of my daughter's bugs put me in the hospital. Call me lazy, but I can't see how I'm supposed to be the primary parent (even with hubby helping a ton, mommy is still #1, I can't escape it), work full time, cook, clean, and then be sick on a regular basis. I am not psychic, but all I can see is me getting fired for too many sick days in that scenario.

So then we talk about me working second or third shift. Which is great, but that requires a lot of energy as I would essentially have no downtime. I would parent all morning, work all night. When would I exercise, which I consider a medical necessity? How would I avoid exhaustion when I'm already handicapped in the energy department?


So parenthood, chronic illness, and traditional employment are not compatible as far as I can see. Maybe once I'm past the adrenal stuff? Maybe once my quick-to-trigger lungs finally settle down? Maybe once the toddler is a bit older and processed through most of the bugs out there so she's not bringing home anything new anymore?

I do bring in income. I do work, but it's nothing 'traditional'. It's all entrepreneurial. Last  year I was on track to building a nice part-time income online, but then the bad economy hit the internet and I lost everything. Tutoring only brings in income 6 months out of the year, so while it pays well, it's limited.

So, to recap, I feel like crap and I don't know why and working is proving to be problematic. Fun.

Pills and Parenting

My husband entertained himself this morning by stacking my pills in a pyramid and snapping this picture on his phone while I was in the shower. I take a lot of pills. More supplements than prescription meds. Typically, they are all over the kitchen in the morning until I'm done taking them and then I pack them up and hide them in a cupboard.

As a parent, I have had to think about how I want to handle all the medical stuff with my daughter. Above and beyond the obvious safety issues.

I mean, duh of course I keep all the pills under lock and key--we use a baby gate and the toddler is never in the kitchen without us. They are stored out of reach. But I also have to consider, should she see me take them?

I decided no because I don't want her to ever try to model the pill popping. Toddlers are such mimics and I don't ever want her to play 'pills.'

As hard as I try to hide the pill popping, she still sees me sometimes. I often worry about the 'norms' I create for her as a chronically ill parent.

Some of them are good...

1. I eat a healthy low carb diet with lots of veggies. She eats the same food as me but also gets fruit and high protein dairy such as cheese, kefir or Greek yogurt. She may not eat everything, but she is exposed to veggies and flavors that most American kids are not. There's no bread. No cereal (which I believe is essentially poison no matter how much fiber it has). No crackers unless it's a whole grain low glycemic Wasa cracker. I make almond/flax/flour banana or pumpkin muffins for her and use 1/2 the sugar (I don't like to give her artificial sweeteners).

I don't sweat sugar either. Junk food happens and even as anal as I can be, I'm not going to be able to prevent it. Junk is so much bigger than me. She gets her share of junk food, but not at home. The only thing I haven't been able to avoid are chicken nuggets. She'll eat them and sometimes that has to be good enough on days when she's being picky.

There are things I would give her, but she won't eat them. Oatmeal. Pasta is hit or miss. Stuff like that.

2. I make sure she sees me exercise and I am pleased when she 'copies' me. "Look, mommy. I exercising!" The goal is get her into several different physical activities once she hits three so that movement is just normal to her. She's been a little sedentary lately but then she was sick for like 8 weeks and then I was sick so we have a reasonable excuse. Daddy is great about taking her to the playground in good weather and playing.

3.If she develops asthma (which is looking likely at this point) my experience will be an enormous help. She'll be able to avoid the pitfalls I fell into. (I was the first chronically ill person in my family and I got no support at all or help--I'll have to talk about that some time.)

Some of them are bad...

1.She is intrigued by my diet soda habit. Although I have completely stopped drinking Coke Zero (that was a major addiction) but there's still some diet root beer and orange soda around. I would rather she never start drinking any of it--I don't think it's healthy, but I am having a hard time giving it up 100%. I came to pop late in my life. I never drank it as a kid or young adult. When I graduated college and started working, I fell into the habit and I regret it.

2.She worries about me because I worry about her. Before I got sick, I spent a lot of time asking her "Are you okay, baby?" because her breathing was so dodgy. So now she does the same to me. "Are you okay mommy?" she frets when I hack. She kisses my boo-boos. She cries when the doctor takes my blood pressure and I now try to leave her at home whenever possible if I have a doctor's appointment. Partly to spare her, partly because it's just hard to have a conversation over her sustained screaming.

We also bought her a doctor kit and we play doctor at home to let her play out some of her anxiety. The home bp unit helps too--I let her push the button. We take her with us when we get shots so she can see it happens to everyone and that we're not afraid. I also found a girl's anatomy puzzle that goes from clothes down to bones and we talk about what bones, muscles, organs etc... do.

I spend a lot of time framing things for her. 'Mommy's cough is a good thing. It helps Mommy feel better' etc...

3.Not being present as a parent. This is the biggie. I'm sick. I'm tired. I don't feel well, but she still needs me to be Mommy. I try to rise to the occasion, but it is hard and I have some work to do to improve my parenting within the context of being chronically ill. Obviously, things improve as I improve, but I need to spend some time thinking about how I can be a great parent when I feel like shit.