I had my phone appointment with Dr. Newman yesterday.
Here is the skinny: it will cost 7k plus airfare (I will stay at my brother's house) to get the treatment (not cure) for LS.
It consists of three treatments, spaced 6 months apart. As I have stated in a previous post, they will be injecting me with my own plasma and stem cells (taken from a donor site on my body).
Is it painful? Yes.
Is it risky? Yes.
Will my insurance cover any of it? No. It is considered experimental.
What is the recovery time? 2 days in LA and 7-10 days once I am home.
What will it do? Help to regenerate my skin and will lessen my symptoms of LS (itching and burning).
Will I still have tearing and fissures? Yes.
Will it take away all of my pain and itching? No.
I have to do some soul searching, research and think about this. I think it would be worth it if I could get some relief and quality of life back.
Can I afford it? No.
We (family & friends) are currently brainstorming on fundraiser ideas for me. So far this is what has been suggested: Avon fundraiser, Craft Bazaar in Utah, Fun Run/5k, BBQ and Box Social.
I am open to help, ideas and support. -S
Saturday, October 27, 2012
Sunday, October 21, 2012
Sunday
I love October, don't you?
I am enjoying a clean house, working on grading & editing while the kids watch a movie and loving the smell of my cinnamon roll candle.
The last two days have been........interesting.
Ashlin dropped a 30lb barbell on her wrist. We ended up at the ER and luckily it was just a tissue injury. The very next day, Maddie was sitting on our leather ottoman and fell off. She landed weird on her wrist and fractured it. We ended up at the same ER, with the same doctor last night. I was mortified. The doctor was awesome about it and asked if Jaiden would be in tonight. LOL.
I ended up taking her in at almost 11:30 pm, so my friend had to come over to watch J and A (they were sleeping). Matt was stuck at a call and at an ER himself, so I was so grateful Shanon could come over. Otherwise, I would have had to wake my other two kids up and drag them with me.
Considering the bleeding leg guy, barfing guy and tattoo guy saying the F-bomb, I am glad only one of my kids were subjected to a late night ER (Providence St. Vincent).
Poor girl is in pain and has to wear a sling and cast/splint for the next 3 weeks. The worst part, it's her writing hand :/. School should be interesting.
I can't believe October is almost over!
Next week, we have ballet, The Fantasy Trail in Clackamas, our friend's Halloween party, Ashlin's harvest party at preschool, our Halloween Party, Jaiden goes to overnight/outdoor school with his class for three days, I have a phone consult with that doctor in Beverly Hills, we are taking the kids to a movie and my girls and some of their friends are getting Halloween manicures as well. I am so excited!
Happy Sunday!
-S
I am enjoying a clean house, working on grading & editing while the kids watch a movie and loving the smell of my cinnamon roll candle.
The last two days have been........interesting.
Ashlin dropped a 30lb barbell on her wrist. We ended up at the ER and luckily it was just a tissue injury. The very next day, Maddie was sitting on our leather ottoman and fell off. She landed weird on her wrist and fractured it. We ended up at the same ER, with the same doctor last night. I was mortified. The doctor was awesome about it and asked if Jaiden would be in tonight. LOL.
I ended up taking her in at almost 11:30 pm, so my friend had to come over to watch J and A (they were sleeping). Matt was stuck at a call and at an ER himself, so I was so grateful Shanon could come over. Otherwise, I would have had to wake my other two kids up and drag them with me.
Considering the bleeding leg guy, barfing guy and tattoo guy saying the F-bomb, I am glad only one of my kids were subjected to a late night ER (Providence St. Vincent).
Poor girl is in pain and has to wear a sling and cast/splint for the next 3 weeks. The worst part, it's her writing hand :/. School should be interesting.
I can't believe October is almost over!
Next week, we have ballet, The Fantasy Trail in Clackamas, our friend's Halloween party, Ashlin's harvest party at preschool, our Halloween Party, Jaiden goes to overnight/outdoor school with his class for three days, I have a phone consult with that doctor in Beverly Hills, we are taking the kids to a movie and my girls and some of their friends are getting Halloween manicures as well. I am so excited!
Happy Sunday!
 |
| Ash. Her poor little hand was so bruised. |
 |
| This reminds me of the last time she broke something! |
-S
Tuesday, October 16, 2012
Zombie 5k!!!!!!!!
I did a 5k with a few of my friends (Jennifer & Shanon) and my husband.
It was such a cool experience. It was a Zombie Apocalypse trail run at Heiser Farms in Dayton, OR.
And by trail run I mean rocks, sticks, lots of mud, hills and uneven terrain.
The Heiser Farm has tons of stuff for the kids to do. My kids kept themselves entertained the entire time! We will defiantly be heading back there next year in the Fall.
The kids started off with a kids dash. Maddie won first place in her age group. Ash and Jaiden did great too. It was fun to get the whole family involved.
Matt & I pretty much stayed together the entire time. I was ahead of him a few times, but he always caught up.
It was one of the hardest things I have ever done, but so much fun at the same time.
It was supposed to rain, but luckily the weather was perfect. I finished within my goal time and let me tell you, my body hurt for about three days after.
I am already planning my next 5k in February. I think we will make it a family tradition. Next time, Jaiden will be running it with me :).
The best part about the Zombie run, the army helicopters flying overhead telling us to stay on the trail due to the area being infected. It was really cool and realistic of a zombie apocalypse. It was also fun to be part of the "survivor" team and look back as hundreds of zombies were waiting (two minutes after we started the 5k) to be released and come after us. Needless to say, I got my life flags taken pretty quick!!
Good times. -S
It was such a cool experience. It was a Zombie Apocalypse trail run at Heiser Farms in Dayton, OR.
And by trail run I mean rocks, sticks, lots of mud, hills and uneven terrain.
The Heiser Farm has tons of stuff for the kids to do. My kids kept themselves entertained the entire time! We will defiantly be heading back there next year in the Fall.
The kids started off with a kids dash. Maddie won first place in her age group. Ash and Jaiden did great too. It was fun to get the whole family involved.
Matt & I pretty much stayed together the entire time. I was ahead of him a few times, but he always caught up.
It was one of the hardest things I have ever done, but so much fun at the same time.
It was supposed to rain, but luckily the weather was perfect. I finished within my goal time and let me tell you, my body hurt for about three days after.
I am already planning my next 5k in February. I think we will make it a family tradition. Next time, Jaiden will be running it with me :).
The best part about the Zombie run, the army helicopters flying overhead telling us to stay on the trail due to the area being infected. It was really cool and realistic of a zombie apocalypse. It was also fun to be part of the "survivor" team and look back as hundreds of zombies were waiting (two minutes after we started the 5k) to be released and come after us. Needless to say, I got my life flags taken pretty quick!!
Good times. -S
 |
| Right before the kids' dash. |
Thursday, October 11, 2012
Food For Thought
A few months ago, Matt took me to a house in Tigard. It was an old couple from Iran. He went on a call there once and really wanted me to meet them. Someone broke into their house and he was so touched and impressed by their hospitality and genuine spirit that he wanted me to experience it first hand as he knows I am a sucker for old folks ;).
We went there and despite them not speaking a lick of English, we still had a nice visit. It was interesting to experience another culture. We were greeted at the door with huge smiles and welcomed in. The wife immediately brought us cookies, fruit and offered us tea. On their coffee table, they had "guest ready" serving dishes and treats.
She showed us a beautiful hand-carved table that her daughter (who is a doctor) brought back from Iran.
We had to leave and I felt bad (as their expressions showed it) that we could not stay longer. They made sure we left with some fresh fruit :). I often wonder about them and if they ever get guests. I also pondered how different our world is today.
Neighbors typically live by each other for years, rarely introducing themselves or speaking. No one just "stops by" (for the most part) to visit and enjoy a snack over some good conversation. In today's world, if someone is hospitable, people question their intentions, think them creepy or strange. It used to be that if you didn't bring a treat by and introduce yourselves, you were considered rude.
Growing up, I knew everyone on my block. Do you know everyone on your block?
It makes me wonder why things have changed, what elderly couple is lonely in their house just waiting for "someone" to stop by.
“True hospitality is marked by an open response to the dignity of each and every person. Henri Nouwen has described it as receiving the stranger on his own terms, and asserts that it can be offered only by those who 'have found the center of their lives in their own hearts'.”
― Kathleen Norris, Dakota: A Spiritual Geography
Food for thought. -S
We went there and despite them not speaking a lick of English, we still had a nice visit. It was interesting to experience another culture. We were greeted at the door with huge smiles and welcomed in. The wife immediately brought us cookies, fruit and offered us tea. On their coffee table, they had "guest ready" serving dishes and treats.
She showed us a beautiful hand-carved table that her daughter (who is a doctor) brought back from Iran.
We had to leave and I felt bad (as their expressions showed it) that we could not stay longer. They made sure we left with some fresh fruit :). I often wonder about them and if they ever get guests. I also pondered how different our world is today.
Neighbors typically live by each other for years, rarely introducing themselves or speaking. No one just "stops by" (for the most part) to visit and enjoy a snack over some good conversation. In today's world, if someone is hospitable, people question their intentions, think them creepy or strange. It used to be that if you didn't bring a treat by and introduce yourselves, you were considered rude.
Growing up, I knew everyone on my block. Do you know everyone on your block?
It makes me wonder why things have changed, what elderly couple is lonely in their house just waiting for "someone" to stop by.
“True hospitality is marked by an open response to the dignity of each and every person. Henri Nouwen has described it as receiving the stranger on his own terms, and asserts that it can be offered only by those who 'have found the center of their lives in their own hearts'.”
― Kathleen Norris, Dakota: A Spiritual Geography
Food for thought. -S
Wednesday, October 10, 2012
Inspiration
Have you heard this song? Love.It.
http://www.youtube.com/watch?feature=player_detailpage&v=O1-4u9W-bns
http://www.youtube.com/watch?feature=player_detailpage&v=O1-4u9W-bns
Saturday, October 6, 2012
Say Yes to that Dress
Since I am renewing my vows in less than 10 months, I decided to start looking at wedding dresses.
I am not one of those girls that dreamed about my wedding day and the dress I would have my whole life. Obviously, I did elope.
I have an idea in my head of what I want. Not white, not traditional and not modern.
This is one I found that gives you and me some sort of direction. Those who are coming with me this Spring, better be taking notes. Hehe.
What do you think?
I want something that does not scream virgin bride. Haha. I guess what I am trying to say is that I don't want poofy and white. I have been married almost 14 years and want something antique, beautiful and classy looking.
One thing that I have noticed, the models in these wedding dress pictures are all about 85-100 lbs. LOL. Not gonna happen! Although, I hope to be at least a size 7 :).
Enough rambling for tonight. -S
I am not one of those girls that dreamed about my wedding day and the dress I would have my whole life. Obviously, I did elope.
I have an idea in my head of what I want. Not white, not traditional and not modern.
This is one I found that gives you and me some sort of direction. Those who are coming with me this Spring, better be taking notes. Hehe.
I want something that does not scream virgin bride. Haha. I guess what I am trying to say is that I don't want poofy and white. I have been married almost 14 years and want something antique, beautiful and classy looking.
One thing that I have noticed, the models in these wedding dress pictures are all about 85-100 lbs. LOL. Not gonna happen! Although, I hope to be at least a size 7 :).
Enough rambling for tonight. -S
Yeah!!!!!!!!!!!!!!!!!!!!!!!!!!!
After almost three weeks of a slow hiatus, I am back to editing!!!!!!!!!!!!!!!!!!!!!!!!!!
Luckily, I have doubled-up on teaching and am doing so again starting on the 9th.
Life.is.Good.
I have a phone consult on the 26th with a doctor in Beverly Hills that performs a plasma/stem cell procedure for LS. It will not cure me, but improve my skin down there. I am excited to see if I am a candidate and get some prices to see if in the future, it is a possibility.
Today, we went to a pumpkin patch with some friends. This month, we are going to the Apple Farm here in Hillsboro, a 5k where zombies chase us, The Haunted Trail in Oregon City, another pumpkin patch, camping, the beach, our Halloween Party, a pumpkin patch field trip with Ash and her preschool AND it is my dad and all three of my brothers' birthdays. Yikes! Love October!
Happy Saturday! -S
Luckily, I have doubled-up on teaching and am doing so again starting on the 9th.
Life.is.Good.
I have a phone consult on the 26th with a doctor in Beverly Hills that performs a plasma/stem cell procedure for LS. It will not cure me, but improve my skin down there. I am excited to see if I am a candidate and get some prices to see if in the future, it is a possibility.
Today, we went to a pumpkin patch with some friends. This month, we are going to the Apple Farm here in Hillsboro, a 5k where zombies chase us, The Haunted Trail in Oregon City, another pumpkin patch, camping, the beach, our Halloween Party, a pumpkin patch field trip with Ash and her preschool AND it is my dad and all three of my brothers' birthdays. Yikes! Love October!
Happy Saturday! -S
Friday, October 5, 2012
Being a Kid
We are crazy busy with some projects around the house. Yesterday, we painted a stand-up deep freeze for the garage. We still need to finish our pond in the backyard, install wood floors in the whole upstairs besides the girls' room and build steps for the hot tub. But, we always take time out to make sure our kids are being kids :). -S
My husband is always thinking of fun things for the kids to do. Yesterday, we bought this barrel for the kids to do this...
Halloween is one of our favorite holidays. I wanted the kids to have something fun in their bathroom, so we added this...
I typically hate the windows down in the car this time of year because I am a wimp and get cold, but Ashlin likes to do this, so I crank up the heat and let her...
My husband is always thinking of fun things for the kids to do. Yesterday, we bought this barrel for the kids to do this...
 |
| Rollin' down the alley. |
Halloween is one of our favorite holidays. I wanted the kids to have something fun in their bathroom, so we added this...
 |
| Just a few sheets of black construction paper. |
I typically hate the windows down in the car this time of year because I am a wimp and get cold, but Ashlin likes to do this, so I crank up the heat and let her...
 |
| Pure joy. |
Tuesday, October 2, 2012
5 Things
1} I got my first pair of leather boots today. The best part, they are Keen, so they are waterproof and should last a long time.
2} My house is finally decorated for a big Halloween Party on the 31st. Hurray!
3} I am being tested for RA in my hands tomorrow. It hurts to put a cap on a pen, button my pants, take lids off and do normal everyday things. I have been in pain for months. Lovely.
4} I am no longer editing, but rather teaching multiple classes from home. This means no drive to the office and I am home 24/7 with the kids. I miss it though :/.
5} I got a beautiful pair of earrings from Matt for my first 25 lbs lost (although I surpassed that goal a while ago. Hehe). Pretty soon, he will owe me for the second 25.
-S
2} My house is finally decorated for a big Halloween Party on the 31st. Hurray!
3} I am being tested for RA in my hands tomorrow. It hurts to put a cap on a pen, button my pants, take lids off and do normal everyday things. I have been in pain for months. Lovely.
4} I am no longer editing, but rather teaching multiple classes from home. This means no drive to the office and I am home 24/7 with the kids. I miss it though :/.
5} I got a beautiful pair of earrings from Matt for my first 25 lbs lost (although I surpassed that goal a while ago. Hehe). Pretty soon, he will owe me for the second 25.
-S
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