Friday, August 30, 2013

Surgery (152.6)

Sophie has to have surgery to correct her scoliosis.

I knew it was going to be bad news when the doctor spoke in soft, slow tones. He spoke directly to Sophie most of the appointment, which I appreciated since it's her body. I think it showed a lot of respect for her. When he finally said "surgery," I gave out a little gasp, said "surgery?" and started to tear up. Sophie sat stoically the entire time, nodding her head and speaking affirmations that she understood. I took my cue from her, and held it together instead of collapsing into sobbing.

Doctor's summary was this: she has a 50% curve in her upper spine and lower spine, so it's an S curve, which I already knew from seeing the xray at her pediatrician's office. They took new xrays at the Ortho appt, so he could more accurately measure. He explained that at 10%, they monitor. At 20-30%, they usually brace. 40% always goes to 50%. 50% always goes to 70%. He refers maybe one patient a year for surgery; so some years, he refers no one. The more severe it gets, it can interfere with her heart and lungs.

She has progressed to 50% in a year, or less. We don't have a definite time frame, obviously, since we haven't been looking at her back. But it wasn't bad enough at her last physical to warrant any concern; and her doctor has always performed a back check at her annual check ups.

The ortho doc said there was nothing we could have done to prevent this. It was going to happen, regardless of whether we'd caught it earlier and braced her. Whether that's true or not or if he said it just to comfort me, who knows. Either way, this is where we are.

After the appointment, Sophie said she somehow knew she was going to need surgery. She said whatever she has, she always gets the worst of it. This child has already been through so much, with vertigo since she was 2 1/2, and repeated strep throat infections in 2nd grade. She's had two MRI's and surgery to remove her tonsils. She missed over 30 days of school in Kindergarten, 1st, and 2nd grade. She was diagnosed at the end of 1st grade with ADHD, and the first drug we tried made her hallucinate after being on it a week; hallucinations are obviously rare. (She's been on a non-stimulant med since then, and it works great for her.)

Her biggest concern is getting behind in school. She finally feels like she got caught up in 4th & 5th grade. She was in honors classes last year and is again this year in 6th grade. I told her we and the school would do everything to make sure she doesn't get behind.

She doesn't want to be left in the dark; doesn't want to be treated like a child. She wants all the information we have, and wants nothing hid from her. She asked if she'd be in pain. She asked how soon she'd be able to walk after surgery. I told her she'd have pain but the hospital will treat it with medicine. I don't know how long she'll be in bed afterward, but we'll find out from the surgeon, who we will be making an appointment with next week. Hopefully we will see him soon so we can get questions answered. She'll be seeing a surgeon in St Louis at Barnes Jewish Hospital, which is where her neurologist was so we are somewhat familiar with the campus. The surgeon is one of the top in his field.

Yesterday afternoon and last night were surreal. I felt like I was outside of myself. Mark took the news very hard. He was practically catatonic for 15 minutes, unable to speak and trying to hold back tears. We went in the bedroom for those 15 minutes. I didn't want Sophie to see him like that. We have to be strong for her.

I called my mom & sister and told them. Sophie and I called my mom together. Mom & step dad are praying for her.

I know that God has something special planned for Sophie. He doesn't let hardships like this go to waste. She is a remarkable person already, at age 12.

I'm very conscious of not letting Luke go by the wayside. When my cousin Eve had brain cancer when she was 16, and died within 6 months of the diagnosis, her parents basically excluded her brothers--one older, one younger--from most of the process. I don't know the details, but I know that the younger brother was especially messed up by it. Obviously losing a sister when you're a young boy is devastating, and his parents did the best they could. But it's a lesson to me on making sure Luke isn't pushed aside during all of this.

The doctor said it can't wait until next summer, so she will miss school. He suggests doing the surgery over Christmas break, and if she recovers well, it's possible she'd miss no school. But we have to be practical from an insurance standpoint. She's on Indiana's high risk insurance, which ends on 12/31 because the state is moving to the national health care program. I think it would be financially irresponsible to have major surgery a week before our insurance plans ends. I can't imagine the nightmares that would cause.

We will all be on national healthcare in January. Healthcare reform has a maximum out of pocket of $12,700. If we can wait until January, then our deductible will be met right away, which I think means we will have zero out of pocket expenses--including prescriptions--for the rest of 2014. There are tons of questions around that, though, because the details of plans aren't out yet. They will be on October 1.

I am praying the surgeon says she can wait until January, that she doesn't have to have surgery sooner than that. I need the time to process all this and prepare, as well as figure out the financial impact.

I was not expecting surgery. I knew it was severe, as I can see it in her back and shoulders, and I saw the xray at the ped's office. But I never imagined we'd go straight to surgery in a short amount of time. It still feels unreal.

We took the films home so we can take them to St Louis. Here's her xray:

Wednesday, August 21, 2013

Mental health morning (152.0)

I took this morning off. I told my husband as he was making his breakfast shake--and I was feeling bitchy & irritated at every move he made--that I needed to go into work late.

I have been feeling overwhelmed by all the things I need to do and all the places I need to go, and it makes me off balance to feel so buried. I have also been hormonal (and there's a full moon, which I swear affects my moods) the past three days. So in order to avoid my killing someone, I came into work today at noon.

What I did:

Luke got on the bus at 7:20 (Sophie's is at 7:00), and at 7:30 I was mowing the yard. I didn't have time to get to it this weekend, and it had been 2 weeks since it had been cut. It was a "pile" that was under my skin every time I left the house or came home or looked out a window.

I don't mind mowing. I like the feeling of accomplishment and seeing results of my labor right away. It takes 45-60 minutes with a push mower, depending on whether I mow vertically or horizontally. Today was a 60 minute day. I saw two cicada's molting, and let me tell you, that was disgusting. There are dozens of shells all over our trees. Totally grosses me out. I hate those things--hate the way their garish sounds drown out everything else outside, and I obviously hate the way they look. Blech. Other than those monsters and the spider webs I walked through multiple times, it felt good to get it done.

Then I stripped the sheets and duvet off of our bed & set them to washing.

Then I put on my running clothes and went for a run/walk. YAY! It felt soooo good. I left at 9:15, listening to Mumford & Sons and thinking it's going to be a hot one. I started runnning right away because I've missed it so much. I ended up doing intervals and walking more than running. My running pace was often in the 10:30-11:00s and my walking pace was in 14:30-15:00, so my speed wasn't horrible. It was hot and humid, and the sun was strong, and my lungs weren't real happy with the thick air, and my heart is out of condition--despite all that, it was a great run. A reminder of WHY I love running in the first place. I hope I can build on it to keep moving forward.

I got home a little before 10, and I did more laundry and vacuumed and dusted. Then I got ready for work at 11:15, at work by noon.

It wasn't a lot of time off, less than 4 hours, and I didn't get everything done I'd like to, but it was enough for me to feel like I have a jump on things now.

I still need to finish my laundry and finish making the bed, and grill 3 pounds of chicken & beef tonight, and give Luke a bath (and check his hair for lice--2nd treatment was Sunday and he still had those damn things in his hair), and get the kids and myself fed, help the kids with homework if they need it, and be at church choir by 7.

I look at that list and think, is it any wonder I feel overwhelmed? Which is justification to start taking better care of myself, mentally & physically.

Tuesday, August 20, 2013

No pie for me (152.6)

Saturday night our church had a dinner/concert that I was in part responsible for coordinating. We have a small endowment called Christianity and the Arts, and the event was a fundraiser. In the past couple of years, the endowment has paid for Bach concerts that our choir director, who is also the choral director/professor at the private university in town and is very accomplished and talented, has put together. They are well attended and unique to our area.

This was the most ambitious and succcessful fundraiser we've had. 77 people attended. It was catered and, by all accounts, the food was outstanding (I helped wait on tables, so didn't eat). The musical performances were goose-bump worthy.

The event started at 6. I got there at 4 to help finish setting up. Part of the set up was cutting the 14 pies the caterer made.

There were 8 different kinds of pies, including unique pies (lemon buttermilk & butterscotch) and my old favorite, chocolate. I cut pies for about 20 minutes. I got pie on my fingers. I served pie to the table I was assigned to wait on when it was time for dessert.

I had zero desire--absolutely no temptaiont--to eat a piece of pie.

They looked lovely. Everyone was oohing and ahhing over them. I let fond memories fill my head, of eating chocolate pie when I was a kid that my grandmother made especially for me. For grandma and me, chocolate pie=love.

And then I let in memories of eating half a pie or more at one time; of sneaking a 3rd and then 4th piece, hoping no one would notice. Then feeling sick and helpless and berating myself for eating so much. Those memories kept me from eating pie Saturday.

More than anything, though, it's the OA program and abstinence that kept the desire for pie away.

I may not have perfectly clean abstinence right now. But I have perfectly clean abstinence when it comes to dessert. And for that I am grateful.

Monday, August 19, 2013

Minutia of my life at the moment (152.8)

It has been a long time since I've posted.

The biggest reason is I haven't had time, or haven't made the time.

I also feel like I don't have much to say. I could rattle on about the minutia of my life--and there's nothing wrong with that and I enjoy reading other people's minutia so I guess I shouldn't let that stop me--but part of me is tired of the of the minutia and the last thing I want to do right now is rehash it here. But since I haven't shared in so long, here's some minutia (apparently I love that word today).

I am doing mostly okay. We are all healthy and life is pretty normal. There have been many, many times in recent years where I couldn't say that. Normal is a wonderful thing that you don't often appreciate until you have too much "NOT normal."

Kids are back in school. Sophie has adjusted to 6th grade middle school (new school, 6-8 grade). She rides the bus home from school now and stays by herself for a couple of hours. She likes it so far. She's in honors classes, so when homework starts this week, I'm sure it will be a lot. She will get a netbook on August 29, and almost all of the homework and resources will be accesible through a website called MyBigCampus. Should be interesting.

She is also in a play (You're a Good Man Charlie Brown) and has rehearsals Friday, Saturday, and Sunday until the show starts the last weekend of September (she's off Labor Day weekend). I was worried about it being too much for her, but she said rehearsals give her energy because she has fun and she soaks up the positive energy of the cast and directors. We are blessed she has found her niche. She feels like she belongs to the theater family and has many friends there.

Luke is in 2nd grade and likes his teacher. One of his best friends is in his class. He also gets to go to the high ability class (it's one period a day with a different teacher who has all the high ability classes), which he loves because they study science and unique ideas that he doesn't get in his regular class. His reading skills have skyrocketed this summer, which has been really cool.

He isn't on his ADHD meds right now, though. We took him off for the summer, which his doctor agreed was okay. Time off lets the brain reset, just like it does when I go off of my depression meds, and it also let him gain some weight (he'd lost around 5 pounds over the school year, which was a lot on his lean lanky body).

When he stopped taking it, he was at 15 mg (we titrated him up from 5 then to 10 then to 15, over several months last year). We started him back at 15 mg, 3 weeks before school started. The doctor didn't say we should titrate up again, but clearly we should have (and are now), because 15 mg put him in a depressed lathargic state. I gave him 2 weeks to adjust, and at the end of 2 weeks he was still sad and quiet while the med was in his system (by 4 or 5 pm each day, it's worn off and he's back to himself). I can't get a refill on the 5 mg capsule until the end of this week; it's a controlled substance and you can't fill them less than 30 days apart. I explained to his teacher. He'll be distracted and fidgety in class, probably, but he'll be fine.

Luke is also in gymnastics, which he takes on Mondays at 4 pm. He's only been going a few weeks but loves it so far. He used to go a couple years ago, but he got tired of it so we stopped, but now he wants to go again. He has fun and it's great exercise for our non-sports boy.

Mark's back is okay but not great. The last procedure he had didn't work as well as the first one did last year. He is finding that when we work out the knots in his glutes and hamstrings, the pain is much better. Basically he has pain from more than one source, and the daily pain often comes from sitting and his muscles knotting up. It's great to have a solution that works for him most of the time.

I am kinda "meh." I am still not running or exercising, and am in a constant state of "shoulds" around it. I seriously don't know what my problem is. I am in the extreme "body at rest" mode. I have precious little time, but what time I do have is usually spent being lazy with a book or TV. Not where I want to be, but obviously my desire to change is not yet greater than my desire to stay the same.

My food is "meh." I'm still abstinent and not eating binge foods. Almost 11 months with no dessert-type foods, which is what my binge list consists of. That has made a huge difference in my life. I do still eat for comfort, though, which I'm not okay with and need to do OA work on. What that means for me now is, I will eat meals when I'm feeling out sorts or sad or whatever, and I will eat too much food and too much food with carbs. I am not carb free--but dessert/binge food free. I don't binge uncontrollably. I don't eat in the middle of the night. But I am not eating as cleanly as I need to be. This disease is still a disease and I fight it everyday. It's just not as easy as it was in the beginning.

We have had a lot of people die lately. There were five people in a two week period that we knew. We went to two funerals. Now our close friend's dad--who we are also close to and is a client--has been diagnosed with inoperable cancer and has a week or so to live. The funerals didn't get to me too badly, other than it being a lot at one time. But our friend's dad, who is 66, has been rough.

That's all I have time for today. Thanks for keeping up with me!

Monday, August 05, 2013

Sophie has scoliosis (151.8)

Sophie had her back to school physical last Friday.  They discovered she has scoliosis. It's in her upper back, looks like it's probably a C curve.

It runs in Mark's family. Our niece, Kelly (who got married last year in Colorado) had scoliosis and had to have surgery in her late teens. It was very serious and I remember how concerned my brother in law was about her. (She looks perfect now, so the surgery obviously worked.) And our nephew, Corey, had something wrong with his spine (not sure it was scoliosis, probably was) and had to have a rod put in his spine to keep it straight. Mark's aunt (his mom's sister) had it so bad that her hips were very crooked. She had to have all her skirts altered so they would hang in a straight line (I remember his cousins talking about this after she died and they were going through her clothes).

I am a wreck.

I feel guilty because it's very pronounced and it's hard for me to accept that I didn't catch it earlier.  I have noticed a slight bump on her back before, but it's never been pronounced and I didn't think anything of it. So now, of course, I feel like I should have thought something of it and am beating my head against a wall at my stupidity.  

Her hair is very long, almost to her waist, and she almost always wears it down.  And she's 12--it's not like I inspect her body on a regular basis like I did when she was little.  She doesn't have any physical side affects yet, no pain or anything.  I can rationalize all these reasons for why I missed it, but I still feel tied up in knots with guilt.

I am filled with fear.  This isn't reversible, to my knowledge and from what I've briefly read online.  It can get worse. Corrective measures include wearing a brace, surgery, maybe some physical therapy.  She'll need regular x-rays to watch the progression. 

This is the child who has had "something wrong with her" since she was 2 1/2.  She already feels limited by her vertigo and migraines, and has emotional scars from all she missed out on because of her extended vertigo spells and from what she misses out on now.  She has almost no arch in her feet and her feet/heels are very narrow; she has problems finding shoes that fit and any time she runs (like on the playground), she feels like she looks weird and her friends have commented on it.

After it was pointed out to me, now it's all I can see when I look at her back. Her right shoulder blade is noticably humped. Her right shoulder is slightly higher than the other. This is such a tough age when it comes to insecurity around physical appearance, and I'm worried about if this will make it worse.

I don't know how to handle all this. She goes to see her doctor next Tuesday. I had her physical done at the Walmart clinic for $30 because her insurance doesn't pay for well care visits. There will be follow ups and specialists involved, which she has already suffered through most of her life because of her vertigo.

I don't know how to help her feel okay about all this because *I* don't feel okay about it. I am terrified I will handle it wrong and really screw her up.

I'm praying. I'm talking to my sponsor today. I don't want to read too much online because I'm afraid I'll read horror stories and make myself more afraid.

I need to talk to my therapist. I have no idea where the money for that is going to come from.

I am a big ball of worry and fear.

She isn't limited physically by it, at least anymore than she was limited before and at least not yet. She isn't obsessing about how she looks, which I hope is a good sign.

It's probably going to be a long road. I have to get it right. And this will all happen during a time when I'm already afraid I won't be a good enough parent during her teen years.

I know that, ultimately, everything will be okay. She's still a beautiful, talented, kind, compassionate, funny, and loving girl, and above all, I don't want this scoliosis to damage any of that. I feel a heavy burden to make sure of it.