Life is So Unpredictable

If any of you read ButtonBirdDesigns. (sample of her work below)

(and I hope you do, she is so artistically talented and a pretty decent writer, too) you know she recently lost a nearly life-long friend who was only 38.  Chrissy was a wife and mom in addition to being a wonderful friend.  Of course, Angela (blogger) is still very distraught.  This loss made her realize she’d really slacked off on healthy lifestyle things she had been doing and she’s doing what she calls a reset and inviting her readers and fellow bloggers to join her.  I commented that I would think and pray about it, but mine would have to be a modified reset, different from hers in the exercise department at least.  And I wrote I’d explain my lack of activity of recent months here–a little biology/medicine/limitations lesson.  Good thing I put that in writing because that’s the only reason I’m doing this now.  It’s been a rough afternoon-evening with our son with autism and my eyes hurt so from crying.  But that is a totally separate post. I encourage anyone reading this to visit Button Bird Designs at blogger.com.  She really has great ideas.

I have multiple chronic diseases/conditions that are all effected by the treatments for other disease(s).  It gets so complicated.  Like that old adage says, “which is worse, the disease or the treatment?”  Sometimes it is truly not to be answered.  One of the diseases that I have had since young childhood is asthma.

Asthma

Asthma (Photo credit: liliazdad)

Sometimes it’s manageable with multiple medications (including steroids, one of the worst offenders in the complications department) and sometimes it requires treatment with IV medications I can only get in the hospital, including stronger steroids than can be taken by mouth.  For clarification: cortico-steroids as opposed to anabolic steroids athletes use. This has been a very unpredictable cycle all my life.   During my first pregnancy, which only lasted 7 months before I developed such severe pre-eclampsia my daughter had to be born by emergency c-section, I was hospitalized 5 times including when I had to deliver.  Once was for hemorrhaging, 3 for asthma and bronchitis.  She had fully developed lungs because of the steroids I’d had, so for that I am grateful.  The rest, not so much.  My second pregnancy, my asthma was better than before conception, which was great.  Highly unpredictable.  It’s also genetic and both kids got it, good thing I know it’s nothing I could control.  Genetics is a roll of the dice.

Anyway, last spring I ended up in the hospital for a whopping 9 days and insurance wasn’t kicking me out yet, so I was a sick puppy, but I insisted I could go home.  I’ve known my pulmonologist for over 30 years (yeah, we’re old) and he said ok.  A little history here; back in the ’60s, steroids were discovered to be such great treatment for inflammatory diseases like asthma, I took at least 30 mg./day on my best days for decades.  Throw in hospital visits, ER for shots, inpatient for 2 weeks average at a time with IVs, that’s a lot of steroids.  So I have adrenal insufficiency.  My adrenals have been bathed in so much man-made steroid, they all but forgot how to make natural steroids called cortisol, a fight or flight hormone.  Hence I always need some prednisone, currently 10 mg. when well.  This much steroid over this many years has led to another wonderful condition known at steroid-induced myopathy, muscle damage.  I don’t know if it’s true for all who end up with this; it’s hard to find information because it’s not common, but for me, with each hospitalization (which had been only 5 days long when I had to go in for 2 decades; my kids never saw this long a hospital stay) the myopathy is worse, takes longer to build back strength, etc.  I still, more than 3 months after discharge, have to use my power wheelchair, even in the house to do any chores, except for walking up to 10 min. 2X/day.  That is what I’ve built up to, in A/C; going to a tag sale did me in for days.  Obviously my exercise module of Angela’s reset suggestion has to be modified big time.

Hospital

Hospital (Photo credit: José Goulão)

I know asthma is a very common thing now.  Believe it or not when I was in elementary school, back with the dinosaurs, I was the only one in my suburban (this suburb where we now live in fact) elementary school with asthma.  I was so picked on because I couldn’t keep up for kickball, jump rope, most things most of the time.  Totally misunderstood.  Now there’s at least one kid with asthma in every classroom.  But people don’t realize that asthma is a killer.  And I’m not talking low percentages.  I don’t remember the ranking in causes of death, I don’t want to remember because it’s up there.  I wanted to smack the dental assistant when I got a filling the other day when she said she knew how I felt because she’s pregnant with twins who push on her diaphragm and when she forgets her inhaler she feels it with her asthma.  She’s lucky I have a policy against hitting pregnant women no matter how dumb what she says is.  That’s like saying I know how you feel being pregnant with quints because I was pregnant with one child at a time.  I take prednisone, 3 inhalers, 2 other pills to get through a good day.

Like so many other things, asthma is a spectrum disorder.  When I last went to an allergist I was in high school.  Now I lived in the town where Hamilton Standard was and they made space suits for NASA.  Trying to be funny, he told me I was (still appear to be) allergic to everything that can be inhaled, so I should just tell them I needed a suit so I could do life.  HA HA HA Just what everyone should have as wardrobe.  But that is the severity of my asthma.  It is a large part of why I am on social security disability, I develop status asthmaticus (asthma that no amount of meds can completely control) at the drop of a hat, often need oxygen round the clock, nebulizer treatments 4X/day.

So that is my biology/medication/limitation lesson for the day.  Add a young adult son with autism and anxiety disorder to the mix and it’s just a grand old time here.  If you’ve read this far you deserve an award.  Good thing I wrote this after I got the Sunshine Award, huh? 🙂  Thanks for sticking with me through this, I hope, education in asthma article.  So, did you learn anything?  Please let me know!

Janet

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About craftythriftydecoratingwifemom

I thank God for all the wondrous gifts he's given me daily. Reading many of your blogs has inspired me to get busy and stay busy doing things I used to enjoy and just fell away from. And you've given me courage to try new things I've never done before, things I'd have been afraid to try a few months ago. Thank you for your unknown contributions to this woman's life.
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6 Responses to Life is So Unpredictable

  1. Mom says:

    Sending best wishes and love your designs.

  2. I knew about your health problems before, but this was a refresher on how difficult it is for you on a daily basis. I know you try to do your best within your limitations.

  3. Thanks for sharing your story…I knew asthma had a wide range of symptoms severity but had never met anyone on the sever end as you obviously are. Prednisone is a harsh medicine to take-I can imagine it has reeked havoc on your system. Take care of yourself and I will say a prayer for relief from your symptoms…thank you for stopping by my blog and thereby introducing me to yours.

    Melissa

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