Make way for a new patient!!

Tomorrow Sunshine (my daughter) gets her tonsils and adenoids out and ear tubes put in.

I knew when she was very young that this was was probable.  I come from a long long line of people with ear, nose, and throat problems.  I took one look at the size of those tonsils and knew they would be trouble.

I had two rounds with ear tubes when I was young.  I continue to have ear infections into adulthood.  Last year my right ear drum ruptured.  Not a fun experience.  I still have hearing damage on the right side.  So I’m not ignoring you.  I really can’t hear you.

I had my tonsils out when I was 21.  That is such a painful experience when you are older.  I literally had a straw in the bottle of Roxicet because it hurt so much.  I was thrilled when Sunshine’s pediatrician finally said that she had reached a point with all the ear infections and throat infections that she now needed to see a specialist.  And like I suspected, the ENT recommended surgery.

I’m very honest with my child.  I tell her what is going to happen, how it is going to happen, and what to expect afterward.  I don’t lie, I don’t sugarcoat.  I do use correct anatomical terms (for EVERYTHING) and I speak to her as a valued member of the family.  She helped me make pudding and jello today in anticipation of her throat feeling “sore” tomorrow and the day after.

I’m actually nervous.  This is my kid.  My baby.  When she was a few months old she was in the hospital with severe gastritis.  She’s had salmonella.  She was colicky.  A projectile vomiter until she was a year old.  Even now its hard to get her to eat.

And she has an amazingly high threshold for pain.  When she was at her six month check up, the doc looked in her ears and asked if she was tugging on them or crying or running a fever.  Nope, not at all.  Child had a double ear infection.  Since then she has to be REALLY SUPER SICK before she will complain.  I now know that when she starts complaining of pain or when finally gets lethargic, she is at least two days into an infection. So I’m just nervous.

As for me?  I go back on the poison as of Friday.  But I honestly don’t know which is worse.  I’m at day 11 past my last dose of methotrexate.  It has been explained to me that by now the effects of the methotrexate are out of my system and the massive fatigue and pain I’m experiencing now are “pure disease related”.  I slept 11 hours last night and another 3 after putting Sunshine on the bus this morning.  My pain is definitely worse in my joints, mainly hip, knees and elbows.  I have next to no appetite.  That can be a good thing, however.

I have an appointment for a second opinion two weeks from now at my aunt’s rheumatologist.  My dad has been getting on me about a second opinion from this doc for quite awhile.  At first it wasn’t clear if this doc was even going to see me, as he usually doesn’t see patient’s with sarcoid.  But since I don’t have the “definitive diagnosis” (the biopsy), he’s willing to take a look.

I’m hopeful everything goes well with Sunshine.  And that my husband doesn’t go bonkers this weekend trying to put up with the two of us.  I have tons of jello and pudding and a little bit of ice cream waiting for her.  And it looks like I’ll be enduring more Spongebob, but I’ll try to persuade her to watch more Barbie videos (did I actually just type that?).

Just another mommy adventure.

Why Spongebob and steroids do not mix

I’ve had enough!!

Oh dear God!! Maybe it was bound to happen eventually. Who knows? Other than the massive weight gain, I get extremely irritable on steroids. Not right away, thank God, or the wedding would have been…interesting. But it has been an insidious process.

I started out at 60mg per day. And the dosage has been toyed with since that time. Today I tapered down to 5 mg. I am nervous about it. This is the lowest dosage I have been on in four months. The last time they tried to taper me..my eyes rebelled. But I wasn’t on methotrexate at the time. I am hoping this goes well because I’m not sure if I can continue going on like this.

Back to the little sponge.

My daughter is a huge fan. I was a huge fan before her birth. I get the adult humor that the creators of the cartoon claim to know nothing about. I think I have seen every episode at least twice by now.

We have Directv, so we get at least six channels of Nickelodeon. That means at least 24 hours of Spongebob. And my daughter loves it. She doesn’t necessarily watch all the time, just having it on in the background is ok, but she loves that sponge.

I lost it the other day. The voice just got to me. I told my daughter “ENOUGH ALREADY! Find something else to watch. I don’t care what it is, just no more Spongebob!!!”

She complied, but the first time she thought I wasn’t paying attention, on went the sponge, and again that high pitched voice. “TURN THAT OFF!” “Why Mama?” “I don’t know, I just have no tolerance for Spongebob today”

I hate this aspect of the steroids. I turn into a different person. I’m glad that it is not that often, but when I have an irritable day, I snap at everyone. I have no tolerance of my husband’s sense of humor, no tolerance for Spongebob or my daughter’s antics, no tolerance for my mom’s politics, I just want to go in my room and read.

I have explained to my daughter that mommy has “Grumpy Bear days”, she has a Care Bear book and I used that to illustrate to her that sometime people don’t feel happy all the time. She seems to be on board with that. I am so lucky to have such a wonderful, intelligent and thoughtful child.

My husband usually thinks I’m mad at him. Which is not the case at all. I’m just mad at the world and EVERY SINGLE THING gets on my nerves. The air is annoying. My skin is annoying. I just want to scream. And sometimes it gets misdirected.

I can’t wait to be off of this medication. It truly is the devil. I understand the reasoning behind it, and it probably saved my eyesight. But steroids and my life do not mix. And my life involves a relationship with a sponge who lives in a pineapple under the sea….