Everyone keeps telling me to write about all of this– there have been a lot of mentions of a book someday– but honestly, the more I am pushed, the less inclined I am to do it. That’s why I have kept this blog mostly quiet during this whole odyssey (as we are calling it).

Today I am either feeling inclined to writing, or tired of being hassled to write. Not entirely sure which, so we’ll see what comes out.

I will start by saying that I’m doing really well in rehab. I am in a very good acute rehab institute in a hospital about 30 min. south of my home. Not the same hospital where I was in the ICU. For EIGHT WEEKS, by the way.

I have been at the rehab institute for about ten days, so far, but they expect me to be able to go home tomorrow! I have been working hard, plus I have a young body that is happy to be moving again. Plus, my tube feeding is going well, and I am slowly putting weight back on.

My attitude is positive for the most part, with occasional moments of fear or more often, guilt. The guilt comes from thinking about my family and friends and what I have put them through. I almost died— on more than one occasion– and they had to watch.

I cannot comprehend what that must have felt like.

It’s different for me– 1) I have no memory of the days during those close calls. The combination of trauma and powerful drugs has left those days missing. 2) I can’t internalize how close it really was. When you are almost dead, you don’t know it. At least I didn’t. I am really glad I can’t remember the looks on anyone’s faces.

I just can’t even imagine.

Ugh. Guilt.

So I work hard for them. For whoever is reading this, too. So you all won’t have to worry so much about me. I will still require a lot of care and help from the people around me– Jer, my parents, my friends. I will still be a lot of work for them for a while, but at least they don’t have to worry about me living. I am “out of the woods,” so to speak. Everyone can finally relax for a minute.

Not everyone knows, but I have been getting sick for a long time. Since January or February at least, when I first started losing weight. When it got to be April and May and I was still losing weight, that’s when we finally figured out that something was wrong. But we didn’t know what to do, and for a bit, Lyme treatment seemed like the answer. But I was too far gone. I spent most of June and July being sick and home bound.

But.

Now… I feel better than I have in months. I have more stamina and energy than I have had since our trip to St. Louis in May. I feel some apprehension about going home, but I am mostly ready.

It is going to be an adjustment for my whole family– I have been gone a long time. July 11th is the date I was admitted– almost TEN weeks ago! Crazy. Going home still seems a little unreal. Mostly because I don’t remember leaving home…

I have been putting off writing this because it seemed like too long of a story to tell. But with so many friends near and far asking for it– here is my attempt at an explanation of the events so far (without going too far back).

I should say for my long-distance friends, that I have been getting sick for months. I have lost more than 30 lbs. in the last six months. This unexplained, uncontrollable weight loss is part of what landed me in the hospital. Additionally, my old RA diagnosis was recently proven incorrect when we found out in June that I actually have Lyme disease. Lyme is not what put me in the hospital though.

I should also say that the details of that night and the first week or so are only what has been told to me. I don’t have any memory of that time myself, so I only know what Jer or my dad has shared.

On July 11, exactly four weeks ago now, I was at home with Jer when I stopped breathing. Jer called 911 and the paramedics happened to be around the corner at the gas station. They arrived in less than two minutes (miracle). They intubated me and took me in the ambulance to the hospital. The kids had already been put to bed and stayed asleep through the entire thing (miracle). Jer made, what I imagine to be, a lot of phone calls to the stake president, the bishop, my parents, the Relief Society president (who happens to work at the hospital and was still there– miracle), a friend to sit at our house with the kids, a friend to drive him to the hospital, etc.

I have been told I went into cardiac and pulmonary arrest. I was EXTREMELY acidotic– apparently to levels that most people do not recover from. I am assuming I was admitted through the ER– one of the nurses told me I was a “code blue.”

I was moved to the ICU, and I remained intubated and on a ventilator for the whole first week. I was also heavily sedated most of the time, hence the memory loss. I think most of this week was spent trying to figure out what was wrong with me and debating about transferring me to Loma Linda. On the 17th, they gave me a trach and performed a muscle biopsy on my right thigh. They put a feeding tube in my nose and gave me liquid feeding that way.

It took a week to get the results of the biopsy back. Meanwhile, they treated me with steroids and antibiotics, I think. The biopsy came back positive for a rare disease called polymyositis.

The treatment for polymyositis varies– but they are treating me with something called IVIG. And the steroids and antibiotics.

But even knowing what I have doesn’t make me ready to go home. Now I have to build my strength back up from the polymyositis muscle loss plus being in bed for so long. AND I need to put some weight back on. Currently, I weigh less than 100 lbs. A little frightening. When my muscles are built up enough, I’ll also be able to get the trach out.

Those are the goals to get out of here. How long it will take, no one knows.

But I have the best pulmonologist as my primary and the best nurses you could find anywhere.

My family is being taken care of — I don’t worry about them. I only struggle not knowing how long I will be here. I knew this would be long and hard, I think I didn’t realize HOW long or HOW hard.

There you have it– the latest and most basic.

Okay, I’ve written a few resolution posts in the past, but it’s been a couple of years, so I thought I’d give it another go.

I’m trying to be pretty simple and small here because I feel like that’s about all I can handle and achieve right now. I’m really just trying to get into better habits and it’s easier if I’m not changing my whole life at once.

Anyway.

This year I’d like to:

  • Write every day.  Something.  ANYthing.  The grocery list doesn’t count. Just a little bit of prose, blogging, journaling, whatever to keep my skills from totally rusting out. (I’m also hoping this will help me catch up on the all the back-blogging I’ve got to do– pretty much all of 2012!)
  • Go outside more.  We live in a beautiful that has lovely weather most days, we should be out enjoying it.  It’s difficult in the complex we live in because there are no sidewalks and the roads are in ROUGH shape, so we can’t ride bikes or even really go for walks unless we drive somewhere to start from. :-( I’m still hoping getting outside will be easier this year now that I don’t have an infant, and I’m REALLY hoping to get a backyard of my own this year!
  • Turn the TV off.  The TV is my go-to for when I need to get things done and want the kids to be distracted.  Unfortunately, I feel like it’s left Addie incapable of entertaining herself.  She needs to get better at it, and so do I.

That’s all I’ve got.  And I feel like it’s enough.  If I can look back at the end of the year and have all of those things as new habits, I will be inordinately proud of myself.

:-D

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We had quite a whirlwind of a December, as usual.  We had activities from our advent calendar to do every day, plus our usual Christmas craziness.

Addie wrote a letter to Santa BY HERSELF for the first time! I wish I had gotten a picture of the letter, but I know she mentioned Barbies and the Pocahontas movie (which Santa, sadly, could not find).

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Another one of our advent activities was to build candy/graham cracker houses. They turned out pretty good and Addie and I had a blast in the bulk section of Winco picking out all the different kinds of candy.

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We also went to the Temecula Christmas Parade in Old Town with our friends, the Copes.  It was really cold (for Southern California) and it was the longest parade of my life.  We won’t be going back until our kids are much older.  And coming from someone who loves parades, that is saying something.

Ben and Addie had a lot of fun at first, but after 2 hours with no end in sight, we left.

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I’m so grateful for the Copes.  Valerie is definitely my best friend here, and I would be lonely without her.

IMG_0545(Ignore Valerie’s squinty eye– we joke that she’s got a lazy eyelid.)

The local mall had a Christmas storytime every week that we went to with various friends.  The kids especially loved the free hot chocolate and cookies.

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Addie had fun making presents for her aunties and uncle. We made them some keychains using this tutorial. So easy and so cute!

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We didn’t get to go to the tide pools on Christmas Eve because the kids were sick and it was raining.  Such a bummer!  We had planned to go sometime in January instead, but it has been super cold!

I didn’t get too many pictures of Christmas morning (SO exhausted!), but here are a few:

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My parents and Madison came after lunch and we opened even more presents (apparently, Santa left some at their house for us)!  Then we had a nice dinner together.  Not traveling on Christmas was awesome.

Here’s Jonas with Grandma (and Jake, the Neverland Pirate):

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We had a great, low-key Christmas and I hope they are all like that!

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So… this happened.

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It’s hard to tell, but that’s a flat tire.  The inner edge of which is gaping open after exploding on the freeway when I was going 75 mph.  Super scary, and super blessed and watched over.

Looking back, there are so many little things that could have made the whole thing a lot worse.  We are so blessed.  We weren’t far from home, there was a nice, wide shoulder, we didn’t have to cross any traffic to pull over, we didn’t hit or get hit by anyone else, I already had snacks and things for the kids to do in the car in anticipation for the long drive ahead.  So many small things that made it… almost not a big deal.

I was on my way to San Diego with the kids, but we were less than 10 miles from home.  We have roadside assistance, so the tow truck guy came and put the spare on for me.  We went straight to the Costco to buy some new tires (isn’t that exactly what you want to spend $400 on the week before Christmas?), and then…

This happened.

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That’s Jonas eating his first hot dog.  We got to Costco around 5, so the kids and I ate dinner while our new tires got put on.  The kids were hungry and well, what was I supposed to do? (Other than cry when Addie spilled my Coke all over the table.)  We all got hot dogs and we were all happy.

Well, I was only sort-of happy.  Happy to be alive, but mostly exhausted from shock and adrenaline.

The whole thing was surprisingly… easy.  We just kind of pulled over, called roadside assistance, waited a bit, sat in the car while the tire got changed, drove to Costco, ate dinner, and were home right at bedtime.  Seriously so blessed that something so terrifying and potentially dangerous was just. so. easy.

I hope I never have to go through that again– what are the odds of it ever being so easy the next time?

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Halloween was so fun this year, although I probably say that every year.

This was the first year that Addie picked out her own costume– and she picked it out, oh, in January or so.  (In fact, she has already picked out her costume for next year!)  Anyway, she chose to be Jessie from Toy Story, and being the fan of family costumes that I am, I decided we would all be characters from Toy Story.

Here she is before she put her Jessie shirt on.  Aren’t those chaps just the cutest?

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Jonas was easy– we have some old Buzz Lightyear jammies from when Addie was little.  But what could Jer and I be that would coordinate and not be too hard to make?  We decided on Mr. & Mrs. Potato Head. (After being Mike & Sully two years ago, I got pretty good at making costumes out of old shirts and felt.)

This year was also especially fun because my parents took us to the Halloween party at Disneyland! They went as Mickey & Minnie, obviously, and we had a blast!

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Disneyland is getting to be more and more fun these days, too, because Addie’s finally not afraid of the characters.  We got to see Mickey & Minnie in their costumes:

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AND. While we were going through one of the treat lines, we happened upon a character spot where we got to meet Jessie herself! Addie was in heaven.

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Jessie kept making surprised and giggling gestures, and Addie said, “Jessie, I just really love you.”  (Talk about heart-melting.)  It was just one of those perfect little moments.

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The kids had a good time trick-or-treating through the different lines– there was SO MUCH CANDY.  They also, thankfully, gave out healthy things like carrots, apples and craisins.  I mean, you can really only eat so much candy before you start craving apples.

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While we were there, we got a chance to catch up with our old friends from Provo, the Carters! They are fellow Disney fanatics and the type of friends that you can go along time without seeing and pick right back up where you left off.  They are awesome people and we were so happy to see them for the first time in about 5 years! (We have both had two kids since then!)IMG_2148 web

Jonas was finally old enough to be able to enjoy some of the rides.  He was pretty unsure at first, but then he started having fun. We can’t ever go to Disneyland without riding on the carousel.

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We also went on Dumbo, which is rare for us because the line is usually so long.

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And the classic self-portrait:

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By the end of the night, we all felt like this:

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We stayed until midnight, and I swear it took us three days to recover.

But it was worth it!

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