Healing?

It always kind of throws me off when a doctor uses the word 'healed'. I mean, they're not supposed to do that right? I feel like it's taboo in the scientific medical world where all things must have a logical explanation to chalk something up to healing, but that's what the new rheumatologist just said to me.

First of all, he called me himself, at 7:30pm no less to discuss the results of my follow-up hip xray. That's pretty awesome. He said that he looked it over and the bone infarcts in the femoral shaft were gone and furthermore, the deterioration (or avascular necrosis) of the femoral heads (my hip joints) was completely healed. I mean holy cow, I'm having a hard time not sitting here smiling like a dorkus all alone at my computer screen!

On top of this (which I'm so trying to not get my hopes up about) is the fact that he said the ANA -antinuclear antibody- test the hematologist did in March (which is the main test for Lupus) came back negative. He said it could mean a number of things but the main thing he referred to was the fact that labs have recently switched to a much cheaper and not nearly as reliable method to test for ANA which gives false negatives for about 10% of patients. Ever since being diagnosed in 2003, my ANA has consistently been positive up until this test in March, so he's going back to look at my old lab reports. You can imagine that immediately my mind starts thinking 'oh gosh, what if it's gone? What if I'm all better? What if my life can be normal again?' Great and now I'm getting all emotional about it...lame! So, like I said, I'm trying not to get my hopes up, but what if...???

On the not so great side he said that once you have compression fractures they don't really go away ever...which is not what the neurosurgeon said, so I'm a little confused. And he said my level of vitamin D is good at 36 which I'm about to look up what exactly '36' means. He'll also continue to be my rheumatologist so I'll see him every 6 months for check ups, woohoo!

New Rheumatologist

The guy's name is Michael Mericic and he's supposed to be a rheumatologist who specializes in diseases of the bone in rheumatology...he even had a lovely book displayed in his exam room which he wrote. Overall I liked him. He's nice and he seems to know what he's talking about. He actually kinda reminds me of the hematologist, which is a good thing. Here's a breakdown of what he said:

• There doesn't seem to be any clear reason why my bones aren't as strong as normal. He asked about my past steroid use and besides being the hospital I've never taken more than 20 mg at a time for about 3 weeks at a time...so that would not cause it. Also, the steroids used in the hospital wouldn't show any damage for years to come, if at all.
  
• The CT of my hips shows white (bone is supposed to be gray) on both femoral heads and about a 4 inch section at the top of both femurs. That could either mean there's fluid in the bone, the bone is dead, or it was damaged at that point but has repaired itself.
• The CT of my hips (which was done prior to being bucked off the horse) also showed that my L4 vertebrae had a compression fracture. Weird seeing as the scans of my entire spine while I was in the hospital in Dec were completely normal except for a vertebrae in my neck. So what happened between Dec and April to my back?
  
• He ordered blood work to see how my body is absorbing vitamin D and a repeat hip xray.
  
• They don't give bone medications (like fosomax or boniva etc) to women who are pre-menopausal. I didn't catch why, but seemed like some hormonal thing.
• He didn't want to check my estrogen levels (even though I mentioned it about 3 times) because it fluctuates throughout the month and since my body doesn't show any signs of a hormonal imbalance, there's no reason to think my estrogen level isn't normal.
  
• He also does not like Benlysta. Or rather says there's no reason to like it yet. Basically, he said the studies showed that most of the time there is no or minimal improvement and since they don't know the long term effects, it wouldn't be worth it to risk taking it. Also he said it's about $35,000/year.
  
• He doesn't like the idea of kyphoplasty. Basically that was because the blind studies showed the same improvement with the procedure and the sham procedure. That just goes to show how much power your mind has over your body.
  
• He'll let me know about the blood work and xray and figure out what step to take next.
  

Almost 8 Months Old!

In 2 days Nola will be 8 months old! Time sure does fly! She's cutting her front left tooth. Tony says he can see it poking through and feel it, but I still haven't confirmed that. She was super fussy on Wed and then started getting a runny nose on Thurs (which I figured was from teething) and now she's got a full blown cold. Poor baby. I'm listening to her cough on the baby monitor right now. :/ She still isn't crawling, but she scoots around on the floor well enough and she can stay sitting up without falling over for a LONG time. She also now loves to go swimming and splash in the water when I take her out of her floatie. Pulling hair is one of her favorite hobbies and she especially likes to pull Embry's because Embry will cuddle her and give Nola the perfect opportunity to grab a fistful (or 2) of hair. She also enjoys pulling the cat's fur, but they usually don't stick around long enough for her to get much.

Father's day was this past Sunday and I think Tony enjoyed himself. Embry gave him the airplane she painted for him at Color Me Mine the pottery place and I gave him a card and a photo collage of him and the girls. We went to church that morning and then came home to eat KFC with my parents and go for a dip in the pool. Then we had cake that my mom made and some ice cream and that's about it.

Tony with the girls on Father's Day

We finally met our nephew, baby Micah James, on Sunday (6/19/11) when tony's mom and sister came down from Phoenix to visit. He's so cute! I've always had a thing for Asian babies and he's half Philipino, so needless to say, he's adorable. Embry totally loved him, as she does all babies, but she kept going up to us, pointing, and saying, 'That's Micah! He's my cousin!' Nola obviously didn't know who he was, but she seemed to enjoy being around another baby. It made me a little sad to think that she'll never get to be a big sister...

Me and Micah

Embry, Nola, and Micah

Photo of Micah in the backyard

Anyhow, I hosted my first playdate for the year yesterday. It was so fun! I didn't realize how much I missed having my mom friends over and their kiddos. I used to really stress about being judged for the state of my house, or the grease splattered behind my stove, or the ring around the toilet bowl, but I've come to realize two things:

1) these are not the things that really matter in life, and,
2) we're all just trying to do our best to make it through infant, toddler, and mommyhood. So even if we did have a second to check out our friend's glass tabletop for fingerprints and jelly smudges in between wrangling a spazzing 2 year old and comforting a teething baby, we wouldn't care because we're all just doing our best and that's all we can do.

Back to the playdate- we went swimming! It's been getting super hot here (like 110) and there's not much to do except stay inside or SWIM! It was lots of fun getting all the kiddos in the water and splashing around. Embry had a good time dumping cupfuls of water in her crocs over and over again and we all enjoyed some popsicles in the sun afterward. I'm going to attempt to host one every 2 weeks or so and see how it goes.

Nola and Ryan before swimming

Embry with her popsicle after swimming

We'd like to plan a weekend trip to Phoenix sometime soon as well. We have a thing from livingsocial for a night's stay at a resort up there that also has a waterpark, so Tony and I were going to drop the kiddos off with Dorothea and have some fun on our own. Of course I feel guilty not letting Embry join in on the fun, but she's too small for any of the slides anyway so what would be the point?

My back and hips still hurt like coo-coo-ca-choo-coo (one of our favorite phrases in this house), but I go to see the neurosurgeon on Monday and hopefully he can help me somehow. My back is also doing some weird popping kind of thing when I twist or turn in certain ways. I have super news though! The new rheumatologist's office called and said that they were going to go through my insurance even though they're not contracted with them, so woohoo! I got myself a new (and hopefully good/knowledgeable/caring) rheumy! I go see him on July 1, exactly 1 week from today. :)

Oh also, the white car is like messed up. It's something with the fuel pressure being too low so it's having trouble starting. It'd cost like $700 to fix it and the stupid car is only worth about that much money, believe me, I checked KBB...so we're kind of wavering between trying to see if Tony's dad can fix it (although that would only save us the labor costs and the parts alone are like $400), driving it like it is until it really goes kaput, or searching craigslist for a small (and hopefully not too expensive) Toyota or Honda. I'm sooo done with American cars. Sorry, but they just suck like hard core. Also, the 'maintenance required' light came on in the van. Hoping that just needs like an oil change, that's considered 'maintenance' right?!

Huh?

I got a call from the neurosurgeon's office today to say that the Dr looked over my x-ray and that there is 'no change' in my vertebrae since my accident. So naturally I go, 'uh, what does that mean?' and she (the assistant) says, 'I'm not really sure. Did he talk to you about any follow up treatment or anything?' Uh, no. I have an appt to see him again on the 27, so I guess we'll figure out what all that means then.

I never really thought about what it would mean if my back actually didn't get better. I just trusted it'd go back to normal in 6-8 weeks and I'd be back at it...going to playdates, taking the girls places, going swimming, etc.

The new rheumatologist said he'd see me once and the office manager won't allow him to set up a payment through my insurance. So I guess that means he'll see me once and that's it. I'm not sure exactly what I'm supposed to achieve by seeing him once, but I'll give it a shot.

Nola seems to be really close to crawling, but I thought the same thing about rolling over and that took FOREVER! So obviously I'll post if anything develops on the crawling front, but as of now she's just up on all 4's and rocking back and forth. She can also stay sitting up for a while by herself if I put her there but she can't get up to sitting on her own yet.

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.