Friday, May 27, 2011

Care Package Etc

After getting home from the long awaited appt with the neurosurgeon, what to my wondering eyes should appear? But a priority mail box from a friend not so near. It was filled with lots and lots of fun stuff from my friend Missy and her family and it made me feel so loved! Here are its contents:*not pictured: a wonderful card with messages from Missy, her husband, her brother, her sister, her mom, and her dad! Oh and Lindor Truffles!

  • Neurosurgeon Visit: It went well in the regard that he was very informative and showed me my mri and ct scan from the hospital. He showed me the part where he saw bleeding around L3 vertebrae and pointed out that it was actually a clot (go figure, I can't get away from those suckers!) and it was right in the vertebrae fracture line so he was worried that if it continued, a chunk of that vertebrae would have actually broken off. Let me say I'm glad he caught that one because that sounds pretty painful. When he was scrolling through the testing I had done from the hospital and radiology ltd, he was like 'oh you got a dexa scan?' Which is the bone density scan I had just done 2 days earlier and I asked if he could look through the results of that since none of my drs had called me about it yet. So after he showed me the other stuff, he read through the dexa scan and kept saying 'Ooh. Oh. Oooh.' Like not in a good way. Then he said that I have Osteopenia. Specifically the 'socket' part of the left hip was like -1.8 and the 'ball' of that hip was around -2.4. Normal is 0, anything between -1.1 and -2.4 is Osteopenia, and anything lower than -2.5 is osteoporosis. He agreed that the bone loss could be part of the reason that my vertebrae got fractured from my fall into the soft sand. He said since I'm so young (I seem to be hearing that a lot lately) I could probably reverse the bone loss with tons of supplements and I need to have my level of vitamin D3 checked. He said it would be a good idea to do strength training to improve my bone strength and that I could start trying out yoga and really low impact things like a recumbent bike in about a week. Oh and big news is, I get to try to take care of the girls by myself starting Tuesday! Nola is about the heaviest thing I should try lifting at this point at about 16 lbs, wish me luck! Silver lining in all this is that the rheumatologist that my hematologist wanted me to see is willing to see my now even though he's not contracted with my insurance. So yay for getting away from the sucky rheumatologist I have now!
  • Rheumatology Visit: eh well, you know, it sucked as usual. I don't like this guy. Basically he just checked my head for lesions because my hair has been falling out in masses since I was in the hospital the first time. No lesions. I told him I wanted to get on Benlysta (the first lupus drug to be approved in over 40 years with some amazing testimonies to it's effectiveness) as soon as humanly possible. He said that he doesn't know exactly what the point of their trials were and he's seen no reason it should be used over the other treatments they have like using cellcept or other extremely harsh meds. Hello!? Benlysta actually stops your B cells from attacking like maniacs and allows your body time to heal itself! Just the thought that at some point in my life I might be able to feel 'normal' again makes me giddy. Other than that, it's dang expensive, like 2k/month and I'm not sure my insurance would cover it.
Today was our 6 year wedding anniversary! We took the kiddos out to my parent's house at around 11am and left them there to spend the night. They're so adorable! I just want to love on them all day long! Embry says the cutest things and I laugh all the time at the crazy stuff that comes out of her mouth. Recently as a response to her doing something good, she says, 'You will be so happy for me!' The other day Tony was wearing his pajama shorts and she goes to Tony, E: 'are these your shorts?'
T: 'yes those are my pajama shorts.'
E: 'that's your butt in there!' while pointing
The cutest part though is how much she accentuates the 't's on butt. Argh, so cute!
And Nola, well, she's just adorable. I love her big cheekies and her little rosebud lips. She's got her two little bottom teeth now too which makes for even cuter baby smiles. She's doing 360 rolls all over the place and she's kinda started to figure out how to scoot herself backwards. She laughs at things Embry does all the time, it's so cute!

Anyway, I got on a tangent there. The anniversary was good! We had lunch at the Olive Garden and then did some shopping where we found great deals on workout clothes for both me and Tony. I also got a few new tank tops because not only did I need some in general but with this back brace all of my tops are super tight to pull over it and try to hide it. The shopping was hard for me, hard to stand and walk that long, but we took many breaks to sit and rest. Then we went to see 'Thor' which, surprisingly, I really enjoyed. Then we came home and our wonderful friend Katie made us a delicious pot roast (seriously, one of my favorite meals) and we watched 'Beyond Borders' from Netflix which was quite depressing, but I got an anniversary foot massage, so it was worth it.

I've been thinking a lot about life lately. Why certain things happen...I guess I won't know for a long time. In the meantime, I'm going to enjoy every second I have with those who I love, especially my kids. Recently a girl that I knew from school in Wisconsin lost one of her 6 month old triplet boys. They don't even know what happened, he just stopped breathing, I mean how terrifying must that have been for her? I can't even imagine, I don't want to, but I know it's been weighing heavy on my heart ever since I read her blog. I don't know why these things happen, but I've been making sure to love on my babies so much more because of them. Please stop by Melissa's Blog and pray for her and her family or leave a word of encouragement. Life is precious, please don't waste a moment of it.

The other night, Nola was uncharacteristically whining in her crib long after she had gone to sleep. I decided that maybe something was wrong, so I went into the nursery and checked on her. Besides having a wet diaper, she was fine, so I changed her and then sat and rocked her for as long as my back could stand. I hadn't gotten the chance to do that with her yet. I went into the hospital when she was 6 weeks old and when I got out, I could barely hold her. Then she started sleeping through the night so she never needed me. Then this horse accident happened and once again I wasn't allowed to lift her. Things happen, people get busy, but I'm determined to remember what is important in this life and make time for long snuggles and saying 'I love you' and really meaning it.

Thursday, May 26, 2011

Thursday, May 19, 2011

Good News

My echo cardiogram came back perfecto! It's pumping at 55-60% which is perfectly normal. My hospitalist said it must have been divine intervention that kept me from dying back in December...truer words were never spoken! Also, my chest CT looked good. There's a bit of residual fluid and scarring at the bottom of the lungs, but that's to be expected and they'll just keep getting better with time.

Tuesday, May 17, 2011

It's Lost

I feel like I've lost my funny.

You know, I used to see all these things, day to day things, and think, oh gosh that's funny! I need to blog about that! Sometimes I still get it back. Like when I was standing on wobbly legs in the middle of a wash, Tony pretty much holding me up while I wiped my snot on his shirt, and I looked at him, whined, and said 'why did I have to get the stupid horse?' Or when the nurse tripped on something in my room, let an explicative fly, looked at me and apologized profusely. I don't say, 'oh it's ok, no worries!' Instead I say 'that's it! You're fired! Where's security?!' I guess in situations where there seems to be no imminent light at the end of the tunnel, I turn to humor because, really, what else can you do?

I used to laugh...a LOT. Now, I guess life just doesn't seem that funny anymore. I'm kind of in a funk of wondering why these bad things keep happening to me when I try to hard to do the 'right' thing and yet I see people all the time being 'rewarded' (or what seems as being rewarded) for doing the 'wrong' thing. I don't want some amazing life with lots of money and a huge house and hours spent lounging by the pool while the maid washes the windows, I just want a normal life. I wonder all the time how incredible it would be if I was healed. I mean, if I could run around with my kids and roll on the ground and laugh...I don't think that's a whole lot to ask for, but the thought of other people having that ability and not fully enjoying it, well it's turned me into a grouch.

In no way am I perfect (hahaha, let's all take a moment to laugh. Ok that's long enough.) and I don't deserve anything more than anyone else, but geez, can't a girl catch a break?! Now is the part where I get mad at myself for feeling this way because I'm blessed in a million ways, more than I could ever name. When I first called my mom from the ER when I found out about my back, she said 'why does this stuff have to keep happening to you?' I know it was a rhetorical question, but all I said was, 'well it could have been A LOT worse' so all I should feel is thankful that I'm still alive and didn't get trampled or hit my head on a rock or gotten paralyzed.

When I think about it all in the short term I'm reminded of how far I've come since Dec when I was literally on the brink of death and I think, 'it's only 6 weeks. If I make it for 6 weeks, then everything will be ok.' I now realize that I never asked if there was going to be any lasting damage from this injury, but from the way the drs talked about it, it seemed it would all just repair itself. I guess the only thing to do is pray about it and trust that God knows what he's doing.

Dear God,
I just want my funny back. You know what I mean. I love you.

Here is a print out of my CT scan. You can see the 4 vertebrae above the tailbone are not square, they're squished. I've lowed my dose of pain meds, but quickly found out that if I try to lower them too much it becomes quite unbearable. I'm having mixed emotions about all of this. I'm upset that I was only 'normal' for like a month and then got sent right back to not being able to function again because of some stupid horse. I'm sad that I don't get to watch my kids or play with them when they are home, but also happy that I have so many friends and family that are willing to watch them during the day when tony is working. I really appreciate all the help and we definitely couldn't make it without the help, I just wish I didn't need it in the first place. Every morning when I wake up, I think, this will be the day where I am all better! Then I try to get out of bed and realize, nope, not today.

Anyhow, I saw the hematologist today and he said my blood tests came back normal. He wants me to see this certain rheumatologist that is also a bone specialist. Of course he's not contracted with my insurance, but the hematologist talked to him and he said he'd see me for free if I have an abnormal bone density. That means I'll be going in for a bone density scan sometime.

Nola is babbling a lot more. She's making ga, da, ra sounds and just being cute overall. She loves playing in her jumperoo (she's fallen asleep in there a few times recently) and scoots herself backwards in her walker. We've been giving her baby food before giving her formula and she seems to like most of it pretty well and is actually swallowing it. She hates the meat ones, although they're only in the level 1 baby foods so we're thinking they don't taste too appealing. Tony took her to her 6 month dr appt last Tues (5/10) and she said we could stop the acid reflux meds since she was spitting up less (although I don't really understand that) and she prescribed some nystatin cream for her diaper rash. I obviously didn't get to go since I was in the hospital, but Tony brought home a paper with her stats:
Height: 27" (>75%)
Weight: 16lbs 3oz (50%)
Head: 40.5 cm (5%)

Embry has been doing pretty well going on the potty with all of this shuffling around from house to house. I was hoping it wouldn't derail our progress. She's had a few 'accidents' here and there, but we figured out that if we send along her potty chair, she tends to do better. She sure is getting a lot of time to play with her friends through all of this!

Wednesday, May 11, 2011

Horse back riding = pain

Here's the deal: I got bucked off a horse on Saturday and the only picture I got was of Tony's backside while he was trying to get on his horse. Really this is quite ridiculous.

The Story: We bought some tickets through living social a while back for a 90 minute horseback trail ride at Pantano Stables. I wanted to go for my birthday last year, but I was 8 months pregnant and in a bit of pain, so I decided not to. The tickets expired on May 13, so we needed to use them last weekend. We dropped the kiddos off with Danielle at 7:30am on Saturday and drove over to the stables. We were riding with about 7 other clients (4 little girls and 3 adult women) and 2 'wranglers' that work at the stables. We were the last 2 to get on our horses. While one of the women was mounting her horse, she said she was an experienced rider and wanted a horse with a little bit of spunk. Naturally I say, 'I'd like a horse that's exactly the opposite of that, like if he was any slower, he'd be going backwards!' They gave Tony and I what they deemed as tame horses and we were on our way.

There was a wrangler leading the pack and a wrangler behind me bringing up the rear. We went down into the wash to start the ride and I asked the wrangler if he'd seen many rattlesnakes out there on the trail rides and he said, 'well, me personally, no. -pause- but this is my first time doing this.' Turns out he normally drives the stage coach out at Old Tucson but the stables were busy that day so he came over to help out. A girl that was riding about 4 horses in front of me had one of those horses where they just mosey along and try to eat any tree or bush in site, so the wrangler rode up next to her to make sure her horse didn't get too far behind.

All was well, we zig zagged from the left side of the wash, to the middle, the left again. I noticed that when my horse went downhill, he would sorta trot for a few steps, which was fine with me, whatever. Then we crossed over to the right side of the wash, went uphill a bit, and made our u-turn to start the ride back. Before we started going downhill again, my horse started to poo. Earlier in the ride, the wranglers said to stop if the horse needed to pee, but to make them keep walking if they were pooping. I let him stop for a few seconds to figure out what he was doing, then made him keep walking. Then we got to the hill down into the wash and after he took the first couple steps, he bucked and I went flying. It was uphill on our left, and downhill on our right. I flew out of the saddle towards the right side while yelling 'aaaaaaaaaaahhhhhhhhhh.' I did a sort of sommersault/roll mid-air and hung onto the reigns while I was in the air. I could hear Tony calling my name as I was flying. I closed my eyes and landed on the back of my right hip and rolled onto my left side. Somewhere in there I let go of the reigns. As I was on the ground I could hear the horses hooves beating on the ground and I just kept thing 'oh God don't let him step on me!' Luckily he didn't.

The wrangler that was supposed to be behind me got off his horse and came over. There was blood mixed with a clear fluid (I'm guessing maybe snot) dripping out of my nose and I had those prickers all over my clothes. Luckily I landed in the 'soft' wash sand. If I had landed further down there were a lot of rocks and if I had gone off the other side it would have been closer to the ground, but also on very hard ground. The wrangler asked if I could move and if I wanted to try to stand up. I didn't really think I should move in case my back was hurt, so I was getting a little agitated and said (in a not so friendly way) 'call 911, doesn't anyone have a cell phone?!' Tony said something about my hips and kept asking if he could get off his horse. I told the guy I have bad hips and he wanted to to roll onto my back, so eventually I did, which hurt SO bad. Then I went back to my side, then to my knees, and I stood up with the help of a wrangler and Tony. An employee drove his truck down through the wash to pick me up. That truck ride was a bit bumpy and really painful and when we got back to the stables, the fire truck with emt's arrived right away. They put me on a flat board, put on a neck brace, and taped me down the the board (including a huge chunk of my hair). My bp was quite high, like 190/130 and eventually the ambulance got there and took me to the hospital.

I was in so much pain on that flat board, I can't even tell you. It was definitely worse than giving birth without an epidural! I asked everyone (the emt's, the ambulance guy, the nurses in er) if I could have pain meds. The first 2 didn't even have any and then some guy (I'm not sure if he was a nurse or what) in the ER said, 'well first we're going to get your IV in, then we're going to do some x-rays, then maybe we'll talk about pain meds'. I swear I almost slugged him, jerk. Then my actual nurse came over (super nice) and I asked her and she said, 'oh I'm giving those to you right away!' and had them in her hand.

Once I went to CT, they got me off the flat board (yay) and saw that my L2-5 vertebrae (lower back) have compression fractures from the impact of the fall. Later they did an MRI which showed that there was bleeding around L3 so they needed to stop my blood thinners. Doing so would mean they'd have to do surgery to put in a temporary clot filter in my groin area. I did that under conscious sedation and I'm happy to say I don't remember a thing. Then they gave me 2 bags of plasma to help clotting and another 2 the next night.

I have a back brace to wear while sitting or standing for the next 6-8 weeks. I'm supposed to keep as much pressure off of my back as possible which means to picking up the kids or cookware or doing any housework or anything that could make me twist. It's supposed to heal on it's own in about 6 weeks, but I have an appt with the neurosurgeon to see how it's progressing in 2 weeks. The hematologist also said that one of my clotting factor blood tests came back funky, so he repeated it and I have an appt to discuss that with him next week. I get to inject myself with low dose blood thinners for 14 days and then they'll decide if they're going to take out the clot filter and start me back on the pill blood thinners again.

I got out of the hospital yesterday and I'm feeling better today. I just have to make sure to stay on top of my pain meds. I was getting quite nauseous in the hospital with the pain killers (they started with diloted, then morphine, and now I'm on oxycodone) so I'm taking some anti nausea meds too.

Sunday, May 1, 2011

Nola is 6 Months Old!

Nola turned 6 months old on April 26! Her 2nd tooth started coming through a few days after her first. It's the other front bottom one. She seems to be in a better moood now that they've both popped through the gums. Yay! She's done a couple of 360 rolls too, so I'm sure she'll figure out soon that she can get into stuff if she rolls far enough. I'd say she's still spitting up about the same amount, maybe a smidge less, but I don't think the medicine is working as it should. She has her 6 month appt next week, so I'll ask about it then. She's doing really well overall and is sooo smiley! I love her!

Embry has been sick for about a week, but is markedly improved today. Her poo finally solidified (yay!) and she hasn't thrown up for about 36 hours, so I'd say she's over whatever it was. It started out as what I thought was a 24 stomach bug. She thew up at night and then not again for 4 days, then we tried to go camping this weekend (which she was SO excited about) and halfway up the mountain she threw up all over the back of my seat. Then 2 more times at the campsite and then I took her home to spend the night at our house where she got sick 3 more times. My mom came over the next morning with Nola (who she was going to watch at her house while we were camping) and stayed here with Embry. She got sick 3 more times while I was gone that day which prompted Tony and I to finally give in and come home from the camping trip. All in all, it was pretty much an utter failure. I guess we just weren't meant to go camping last weekend. Did I mention that the campsite was about 2 hours away? Oh well, maybe next time it will work out. That's life with kids: unpredictable.

Good news is my hips were feeling significantly better the past week or so. Although after going on a 'hike' (as in, I turned around 1 mile into a 5 mile hike) they're not feeling quite as good. I am hoping for the best for the hip thing, that was pretty bad for a while. I had my repeat chest CT scan today and should get the results in a couple days. I was supposed to have my repeat echo cardiogram too, but they called and rescheduled it for tomorrow since one of the techs was out today. I was actually supposed to have it last week, but then Embry got sick.