Dr. Chiang is my pain management doctor for my CRPS/RSD (which is talked about in the article), and a damn fine one at that. We are so proud of her, and so blessed to have her as my doctor! Congratulations Dr. Chiang!
Wow. Where does the time go? I really, really want to try to make this blog a daily habit. I feel like if I can do that, then I will be able to use it as an outlet for some of my feelings- which should help me, overall, with everything that is going on in my life.
Let's start with the big news. This winter has been an absolute beast, and I have flared beyond anything I have experienced before this. It's been hard, and a tad disappointing. The stim just doesn't touch my flare pain. After all we went through to get it, only to find out it possibly, probably, won't work during the winter season, when I am affected the hardest because of the cold. What a blow. Oh well- I am trying to deal with it as best I can.
I react so violently to the cold and winter. The storms, the frigid temps, along with not being able to be as mobile and other triggers, I have been pushed into one of the worst flares ever. As a result of my out of control flaring, my regular pain management doctor, Dr. C, did another left Lumbar Sympathetic Nerve Block, 3 days before Christmas. It worked; I was pain free for 3-4 days. Once the block wore off, though, the pain came roarin' back. At that point, Dr. C referred me to Dr. J- the surgeon who did my stim. She felt that Dr. J could do a week long epidural infusion of bupivicaine (also known as Marcaine), the same med used in the nerve block. The hope is that by bathing the nerve in the med, it will give it the time it needs to really rest, and subsequently give me more pain relief.
The problem with this is that it's a 5 day inpatient procedure. So, on February 28th, I will be going into the hospital for this infusion. Dr. J tried several other conservative methods first, but none worked. God willing, this will help to relieve my pain. Because it's a week long epidural, there are some big concerns- it's not your typical childbirth epidural. Pressure sores are a big concern, since I won't be moving for 5 days. As are bladder and UTIs- I will have a cath in for 5 days. Add in I will be bored out of my MIND...we are already ordering and cataloging our DVDs, so I have tons of things to do while up there! I am hoping that they have internet, so I can blog my experience.
Married life has been good. Gotta be honest, signing Mrs. BLW Squared is still, well, odd! I'm getting better at it though- I have to, since I officially changed my name and will be signing this name for the rest of my life.
We got our wedding pictures back! They rock, to say the least. Stephanie of Stephanie Glover Photography (website and Facebook) knocked them out of the park. I'll put a slideshow at the end of some of the pictures (for the next few posts).
We started the house hunt again, with the hope that this time, things will go a bit differently than they did back in 2009. We found a couple that we like (including this one), but unfortunately, we have to end up waiting a little longer to start the purchasing process than we thought. Sigh; I can't wait to have our own place to make a home!
Brian and I bought a camera! It's a DSLR camera, and I was so super excited to get one. I have been obsessed as of lately- researching, reading, learning, all trying to take in how to take decent pictures. We got the Canon T1i, which came with the 18-55mm kit lens. I know, it's not the greatest lens. But it will work, that's for sure, until we can afford another one (which won't be for a while; have you seen the pricing of DSLR lenses lately?!!). It will be enough for us to learn on. Now I can't wait for it to warm up, so we can take Mindi on walks and take some pictures! I want to take this thing off of Auto Mode and really take it for a test drive! To be honest it's one of the few things that really excites me nowadays- with this disease messing with my brain and the meds messing with my brain and my brain messing with me, well, sometimes, I don't always feel up to snuff like I used to. This makes me want to learn and challenge myself- one of the reasons Brian agree to splurge and buy.
What else? Mindi is doing awesome; she has a friend now! My mom and sister got a Cockapoo named Molly, and boy was that an interesting introduction. Instead of being gungho about it, like she is with the bigger dogs our relatives have, Mindi freaked! Molly, of course, wanted to be friends, but Mindi wanted NOTHING to do with Molly. Well, they are going to have to learn to like each other- my mom is watching Mindi the week I am in the hospital! They did much better the second time around, so I think it's just a matter of figuring out personal boundaries.
Well, I promised a slideshow, so here is the first of several!
Hi. I'm Brittany. And I am blogging from my phone. Yup, I finally figured out how it all works, and this (hopefully, cross your fingers, but don't count on it) means I will be updating more frequently now! Since I don't have to be tied to the laptop anymore, well, I feel free. Swinging in the breeze free. But that's not all, folks (Sorry, Porky)...
I'm recording this blog post using Dragon dictation I downloaded it on my phone. Yup, I spoke it. I figured it would be something that would be nice to try, to see if I didn't have to type all of my blog posts.
It does a decent job; the only thing I haven't figured out is how to put "enter" in; how to make a new paragraph. Even if I have to play for around with it for a little while, it'll be something nice to have around. That way I can have something small and easy for when I'm away from my computer. I figure I don't update all that often anymore, so doing it this way may be a little bit easier and have new blog posts a little bit more frequently.
This version is very simplified and combines speaking with typing; I can edit right in the program. Then I can email, copy into notes, text message, even update FB and Twitter! It's not perfect (I am on just a phone, after all), so I apologize now for any spelling or grammar errors. Gotta say though- this all would be a ton easier if Google and Blogger/Blogspot came out with a mobile app. For goodness' sake, Wordpress and your other competitors have mobile apps, and we all know you have the capability, Google. I love Blogger, and I am not going anywhere but this is one small thing that is really giantly annoying (yes, I made that word up).
I would really like the full version of Dragon. It's kind of expensive, so we'll see how that goes. For now we'll play around with the small version. Well it's4:11 in the morning and I'm exhausted. I'll do another blogpost soon- on the wedding, I promise. Over and out!
Our wedding day was more than I could have ever dreamed of. It went so beautifully, and I have so many memories that I will treasure for many, many years to come.
Friday night was the rehearsal and the rehearsal dinner. Everyone met up at the church- myself, Brian, Meghan, Kelly, Carl, Logan, Macey, Aubrey, Torey, Sadey, Grandma, Dad, Mom, Terri, Mark, Alan, Shannon, Fah-Pow, Devin, Sheenie, Val, Patrick, Karen, and Sonia. We ran through the wedding in its entirety two times. Then we all piled in cars, and headed to Buckley's Tavern. We had a blast there, just enjoying ourselves. Dawn (Patrick's wife), Aunt Cheryl and Brent, Mojo all joined us at the restaurant. The food was wonderful, the drinks were yumyumyummy. We gave everyone their gifts there. Here is what we got everyone:
Parents (Mom, Dad, Terri, Mark)
Silver plated double frame with the invitation on one side and an opening for their choice of wedding pics on the other.
A Lolita wine glass (Little Black Dress)
Lands End Medium Tote, embroidered with MEG
Eliza B. Flip Flops
OPI travel sized nail polishes (5 colors and 1 clear)
Post it notes
Blank note cards
Black Clutch Wallet
3 PocketBacs from Bath and Body Works
Lands End Medium Tote, embroidered with initials
Life is Good mug in Purple
Life is Good long sleeved tee in Purple
Black Clutch Wallet
Blank Note Cards
Vera Bradley Bag in Mediterrian Blue
set of 10 Note Cards
Coach Leather Portfolio
Coach Umbrella in Yellow
Coach Passport Cover
6 pack of Killian's
2 Harley-Davidson Beer Mugs
(I can't remember what else, I will ask Brian when he's awake!)
Cars reusable tote bag (from the Disney store, the ones you can use at the grocery store)
Cars mug with straw
Thomas the Tank Engine MegaBloks
Edward (Thomas' friend) MegaBloks
Percy (Thomas' friend) MegaBloks
Ring Bearer Train that we painted
Disney Princess clear Tote/Purse
Blue Heart necklace
White little purse
Disney Princess mug with straw
Pomander Ball she carried down the aisle
Everyone really appreciated their gifts, which made us feel good- we put a lot of time and thought into them for each of them. I really did not want to do the across the board same gifts for everyone thing; I wanted them to feel like I really thought about them, thought about what they would appreciate, and put some time into it. And before you jump to conclusions, we actually did not spend much money. We tried to get really good deals at many different locations, and that way get more items or nicer items that the person would really enjoy.
For dessert, we did something simple that we both love. Instead of doing a cake (including the groom's cake- that was at the wedding reception for everyone to see), we went to BJ's and Costco and bought some awesome cheesecake. It's a little different and untraditional, but everyone loved it. We did a regular one and a mixed variety one. Everyone said they enjoyed not having another piece of regular cake (since they would be getting it the next day!).
Buckley's really was wonderful. We booked them 6 months in advance, and that is considered late by their standards. They usually book up 9-12 months in advance; we got lucky! There was no problem for guests coming into the room; they were able to just walk right in. They had printed up personalized menus for the night of what we were offering. The food was absolutely delicious (we offered a steak, a crab cake, and a vegetarian option, and the kids could order chicken fingers and fries); it literally melted in your mouth. The atmosphere was the reason we chose Buckley's; it's laidback but still business attire. We like to call it rustic semi-formal. It really feels like an upscale tavern! The room we were in was in the back, and even though the restaurant was crowded (it always is on a Friday), once we shut the doors it was very comfortable and not loud at all. The bathrooms were right there, across the dining area right outside our room; we did not have to cross the entire crowded restaurant nor go near the bar to get to them. The drinks were well done and like I said, yummy. I had several :) The service was okay; they had a new server (it was his first day) and he seemed frazzled by it all. The other guy disappeared for longer than we liked. By the time we got there, it was late and we wanted to get the kids' food first, but it took a while and they didn't bring them all at once. They messed up a couple of drink orders at first, though they were corrected. Overall, the service was okay, but not outstanding. It's not something so bad that I won't ever go back, nor should it deter you from going. The only really big complaint I have is their parking. They have a very, very, very tiny lot, and for as busy as it gets on the weekends, the lot size is just too small. Street parking is available, but some of our guests had to hike a little ways. There were no lines in the lot, except for the handicapped spots, and there were only two of those. There was no rhyme or reason to the parking, and people coming in the out and going out the in- a problem when you couldn't fit two cars side-by-side to get through, and nowhere to pull over to let cars by. I am of the opinion that they have parties and private events enough that they should have separate parking for people attending those events. Really, for as busy and as popular as they are, the parking problem is a huge issue. Overall, I would give them a grade of B+; while everything was wonderful, the parking really was that big of an issue to drop them down to a B+. We had guests show up 15-30 minutes late because of the parking situation. If you plan on going here, organize carpools and adjust your schedules for the trying-to-find-a-spot time.
Consider this your first wedding post. The next one (hopefully tomorrow) will be on getting ready for the wedding (hair, makeup, getting dressed, my only freakout, and arriving at the church). The installment after that will be about waiting for the ceremony to start, the ceremony, and pictures afterwards. Finally, I will talk about the awesomeness that was the reception :) Hey, I have to keep you coming back somehow, right?
One more thing: keep checking out our photog's site. Stephanie Glover did an Ah-Mazing job. I simply can't get enough of our slideshow :) Oh, and our picture is at the top of her website- that's us holding out the rings :) If you need a photog, for anything from weddings to life events to family pictures, I really urge you to go check her out. Switching from our old photog to her a month before the wedding (yeah, that's another story) was the best decision we made regarding the wedding, hands down.
Or not. Well, in terms of what this time of year stands for, it absolutely is. In terms of the cold and extra pain that accompanies it, it's not.
I promise I have been around. I was working on a blog post for a while, and I still am. I am trying to figure out the best time to post it, since it deals with a sensitive and controversial topic.
Anyway, What's new in the BLWSquared household? Not much at all. We rearranged our living room tonight, and it looks great. Since Brian did most of the legwork, unloading everything out of the bookcase and TV stand, I was able to push a little bit instead of lift, and we were able to get everything in position. I then reloaded and organized everything in the display areas, and the books. We dismantled the 55 gal fish tank, which will go into storage; the fish is now in a 10 gal tank. The big tank was just too big, and took up too much room in our tiny place. Once we get a house with some more wall space, we will put the big tank up (and perhaps add some more fish to our lonely ciclid...perhaps).
This now allows for us to put up the Christmas decorations! YAY! Christmas is my absolute favorite time of year. And not just the day, but the period before- Advent, the time of waiting and watching. It started today, and sadly because of my pain level this morning we missed the first service. There is just something so mysterious and marvelous about Advent. Lighting the Advent candles on the Advent wreath, placing the treasured figurines in the Creche...all of it brings back cherished memories for me.
I love decorating for Christmas, especially our tree. One of the things that I absolutely loved about our tree at my mom's was that we never had ornaments that didn't have a meaning. No boring balls, no "kits" from Wal-mart. Every single ornament that was placed on that tree had a story, a special meaning or event that it represented. From Meg's and my First Christmas ornaments, to the wooden ornament with one streak of marker on it that I "colored" when I was a baby, to the various nurse ornaments that my mom has received from both us kids and patients, to the ornament for each and every trip we have ever taken, the homemade ones that my mom treasures so dearly, the Hey Diddle Diddle cow and moon ornaments representing my favorite nursery rhyme, the I Love Lucy ones that my sister collected during her craze for that show (she still loves them). There are so many, and all of them have a story. Some are worth quite a bit, like the ones my mom brought back from Germany (made in West, bought in East) on her trip there when she was in her mid 20s, and others are just colored paper, like the paper one my older sister Kelly made for me when I was a baby. When we unpack them, the stories are often told, memories are shared, laughter and smiles abound. There are certain ones that only that person can put up- like my baby ornaments for me, or the angel getting its wings ornament for my mom (that's a special, personal story). I love our tree, each and every year, because it tells a story. There is nothing boring about our tree, and at night, when it's lit up and the house is quiet and you just look at it...it's truly inspirational. I love how personal our tree is, and I personally think every tree should be that way. It's one of the reasons I give personalized ornaments to people as gifts- every tree should tell a story.
Last year, when Brian and I bought our skinny little pre-lit fake first tree, we didn't have many ornaments. He got his personal and special ornaments from his parents, and I brought over mine. We had some friends give us some old ball ornaments, that we decided to use for color. We also bought some fun ones- like the Sock Monkey one that reminds me of the Sock Monkey I had growing up. There were not many, and it looked a little bare. But it told a story of a new family starting out, and I loved our first tree just for that reason.
In other areas, I am desperately trying to finish the thank you cards for the wedding. Then I get to start in on Christmas Cards :) I love sending Christmas Cards- people today so rarely send things in the mail. The world today has gotten so impersonal with the world of technology. Yes, an email is quick, but a card of any type shows caring. That person cared enough to buy it, write it out, get stamps, stick it in the mail box. We so infrequently get that nowadays, but Christmas and the cards that get sent out take us back to pre-technology for just a wee bit. They distract from our busy worlds, both as they are being written out and as they are being read. I love what it all stands for! We haven't found ones that we like yet- usually we have to go to Hallmark and we haven't made it there yet- but I can't wait to send them out this year.
I was getting ready to type about the wedding, but I figured I would instead do a whole separate post dedicated to that. I'll go do that now :)
People with intellectual disabilities deserve the same respect that you and I, as "normal" people, deserve. We are all human, individual beings created in God's image. We all deserve respect and love and faith.
I read this article on The Review's website (the newspaper for University of Delaware. I guarantee you will tear up at it, as I did. Here is the link.
I took the pledge to never say the R word again. The R (retarded) is a demeaning, horrible word akin to the N word for African Americans and the F word for homosexuals. But everyday, people throw this word around- in a joking manner, in a disrespectful manner, in an ignorant manner. They don't know the hurt that comes with this word, the horrible feeling that eats up a person when someone tosses it around like it's a baseball. And it's not just the person with the intellectual disability, it's also their families, their friends that are hurt as well.
Take the pledge to respect all humans the same. Take the pledge to remove this word from your vocabulary, and to start using people first language. People first language is where you define the person by what they are, not what they have. Instead of saying "autistic child", say "little boy who has autism". Instead of saying "crippled woman" say "the lady in the wheelchair". The person is not the disability, whether intellectual or physical, so don't talk like they are only their disability.
You can take the pledge at http://www.r-word.org/. Then, invite your friends to take the pledge. Make a conscious effort to remove this word from your language, and your family and friends' as well.
While there, grab the button to put on your blog and show that you took the pledge. Be proud of it.
What else can you do? Get involved. There are so many organizations- Autism Delaware, DFRC Blue-Gold Football Game, Variety, Easter Seals, Chimes- and they all welcome volunteers. You can also look into being a buddy or therapy assistant for a child with a disability.
Being a disability minor, I get emails from the school about different parents looking for help with their child- it may be a day buddy where you take them out and have fun to help them learn social skills, it may be watching them after school until mom gets home, it may be a therapy assistant.
I got this email from one mom looking for a therapy assistant for her son who has Autism. Devin has severe Autism and is non verbal, and when I met him he was not potty trained. Shannon is a mom with a mission- she is totally dedicated to her son and daughter, and works tirelessly trying to find any way possible to help her son. When Devin was diagnosed, she packed up her family and moved to Delaware from Colorado, because of the Delaware Autism Program. Talk about a lioness protecting her cub- she reminded me of my mom when we were going through the divorce, doing whatever had to be done to make sure her kids were taken care of.
I applied for the job, and was immediately impressed by what she had done. Shannon had learned ABA (Applied Behavior Analysis; the only accepted form of treatment for Autism) from a professional, then hired students from UD to help with his therapy. She had turned their whole basement into a work zone for Devin to learn in. Every day, after school, Devin would work with his mom and one assistant for 2.5 hours. And the learning didn't end there- whenever there was an opportunity, Shannon used it to help Devin. She even went back to school to get another degree in ABA.
I worked with Devin for a year, until unfortunately I couldn't work because of my leg and RSD. But by that point, Shannon, Fah-Pow, Sheenie, and Devin had become not just friends but family. When Brian and I got engaged, we knew right away we wanted Devin to be our ringbearer. When we asked Shannon, there were tears all around. We didn't care that there might be a tantrum if he didn't want to walk, or didn't want to wear the tux. We didn't care that he might stop in the middle of the aisle to lay down and play with his train Ring Pillow (we did a ring train instead of a pillow, since he loves trains, and gave it to him as a gift!). Meg offered to walk down the aisle with him, and there were more tears when we told her that Meg was giving up walking in the special spot of Maid of Honor to help Devin. He ended up walking down the aisle in his dad's arms, holding the train and the cloth he loves, and we couldn't have been happier.
If I hadn't responded to that job call, I would have never made new family members. I cannot tell you how much Brian and I treasure the memories we have made with Devin and his family. I cannot count the number of gloomy days that were immediately cheered up by his bright precocious smile. I am so thankful to God for sending this family into my life.
Because of Devin, and because of my niece who was recently diagnosed with mild Autism, I fight. I pledge to make a difference by never using the R word again.