Tuesday, October 26, 2010

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.

3 comments:

  1. I had to laugh...you "complain" with grace and humor! Hope that's your intention...

    Like you, I loved being pregnant but my son did not sleep thru the night and YES I DID THE EVIL CRYING IT OUT and I won almost 3 hours later.

    The victory felt hollow in comparison to the guilt. LOL.

    love your blog by the way.

    ReplyDelete
  2. Thank you! I really appreciate your insights. You are the first person who has really given me a clear picture of what parenting might be like with a chronic illness.

    Since I have never found out what exactly is wrong with me, its hard to know if its genetic. Depression runs in our family, as does ADHD. They are both worrisome in their own ways.

    My spouse is away about 1/3 to 2/3 of the year. It would certainly mean lots of single parenting days for me. Right now I am self employed and a full-time student. This means that I'm home and able to sleep whenever I need to. I can't imagine how anyone could survive without sleep.

    I'm moving off the fence now...

    ReplyDelete
  3. Thank you for answering my question. :D

    My next question, why taper so quickly? You seem to be struggling with the current taper schedule. When I was coming down from 5mg, I went to 4mg for six weeks, then 3mg for six weeks etc. I actually got down to 1mg, but my symptoms came back and I had to go back to 10mg for a week then back down bi-weekly until I got back to 2mg where I've stayed. Some of my fellow patients have tapered started at 5mg then every other day take 4mg for two weeks then stay on 4mg for two weeks, then every other day with 3mg etc.

    Hope I haven't overstepped. I just know how miserable it is to come off too quickly and I want to help if I can.

    Thanks again for responding.

    ReplyDelete

Thanks for your comment. I read all comments and do my best to respond to questions, usually in a new post.

If you have adrenal issues and want to connect with other patients the following message boards are wonderful resources:

http://www.mdjunction.com/forums/adrenal-insufficiency-discussions/general-support

http://www.addisonssupport.com/