Ashlin & Her 7th Birthday!!

Ashlin Elizabeth ;)

1st Grade

Whip Cream Beard

Beach Trip

Date with Dad

Surfer Girl

Silverwood Amusement Park

First Soccer Game

Worm Soup

Birthday!!

Ashlin decided for her 7th birthday that she would invite a few friends to Safari Sams. Then we went home for pizza and ice cream. Tomorrow is her actual birthday, but we have two soccer games so today we did her "friends" party. Tomorrow we are going out to dinner and having a family party.

I love her to death. She is such a cutie who walks to the beat of her own drum. She is fascinated with anatomy, astronomy, and animals. When she is older, she wants to be a veterinarian and claims she will have 20 cats! She loves to climb, and is a tomboy at heart. She keeps us laughing with her  questions and sense of humor. I cannot believe it has been seven years since this angel blessed our lives. 

Sammy, Caleb, Mya & Lizzy. All her "younger" friends. Ash is so tall!

She requested a carton of ice cream frosted. Silly girl! I had to frost it with a Ziploc!

Kitty Party. Like her stuffed animals?! Haha!

I love you Ash!!! ~Mom

September Update

I was thinking last night that I needed to update this blog. I hadn't realized it had been so long! I got used to updating Facebook and forgot :/ However, I don't use that anymore, so here it goes!

To catch you up...
I did another fundraiser after a friend of mine in California made a generous offer to match any donations made in the month of May. Long story short, I raised enough to get my 4th treatment on August 28th. We raised around 16k in total. Amazing! I definitely am lucky to be surrounded by such a great community of friends. Seriously so blessed.

My treatment went well and I am recovering. The stem cell site (lipo on my abdomen) is fully healed, but will be swollen for a few more weeks. The injection sites are closed, but I have a cactus prickly feeling, some itching, and the typical bugs crawling sensation. Matt has been on FMLA since the 25th and will go back Monday. It has been great to have his help around the house and with the kids. Last night he even gave me a home pedicure.

I am not in remission, but hope to be someday.  Again, I am so blessed to have found Dr. Newman and his staff in L.A. The stem cell + plasma procedure has made my LS symptoms less (80% reduction in itching, and fissures/skin tears heal in a week rather than months. They are also not as deep) and I am grateful for that. I am excited to see the changes in the next few months as the stem cells do their job in regenerating the skin.

Dr. Newman uses a machine called an Avacen. It reduces inflammation in the body. It is costly (3k), but someday :) It helps with twenty-three other diseases.

For more information go here: http://www.avacen.com/avacen/action?do=welcome

More doctors are starting trials with the stem cell therapy in the U.S. That is fabulous news! Dr. Newman has perfected it though and is in the process of getting some articles published. If you have Lichen Sclerosus please visit his site here: http://www.nathannewmanmd.com/

Hopefully one day insurance companies will cover the cost so people don't have to pay out-of-pocket.

Since this is a blog about LS, below is a picture of what my vulvar area looks like after 4 treatments. The clitoris is gone and the skin tears are about 50% less deep than they were before the treatments. It is a horrific disease that makes everyday functioning miserable. I pray someday, before my vulvar area is too deformed and I have increased nerve damage, there will be a cure.

Thank you so much for all your continued support. xoxox ~S

Kind Words

I know a very wise woman. She has been a rock for me the last couple of years. She struggles with MS and vulvodynia, but never ceases to amaze me. She always has excellent advice for me and recently sent me a message that I will continue to read for the rest of my life. I am posting it here simply for record and so that my girls can read it someday ;)

"For some of us like you and me, giving is so much easier than receiving, to be gracious in receiving gifts from others is an art. You have given me an unexpected opportunity to see what it feels like to receive thanks and supportive words 'just because'. Thank you from the deepest recess of my heart. What a kind and loving gesture. Much love to a wonderful mother who needs to know that you give to your child far beyond what most healthy mothers try to give. They are so blessed to have you as their Mom. Just remember that it is also important for them to see you giving them the example of rest and self care. Do not overdo. Take time to be. Easier for me to say than do but I keep working toward this. Love and prayers for you and your whole family. Gerry"

~S

Raffle!!!!

Hope for Healing Raffle!!

A chance to win one of three gift baskets full of great gear!

(We are still adding to the women's basket.)

Drawing will be on Saturday, June 14th.

You do not have to be present to win. Baskets will be mailed to out-of-state winners.

All money goes to fund Stem Cell treatments for Sherrie Utley Barbee.

Tickets are one for $5 or five for $20.

Thanks for your support!!!!

Theseunspokenthings.blogspot.com

FB Page: Hope for Healing

To Fundraise or Not Fundraise, That is The Question.

I have finished 3 stem cell procedures, but am not in remission and will not go into remission which is a hard thing to accept. While my itching that is associated with the disease is nearly gone (90% better), my white patches and severe skin tearing is very active as I have yet to go without a fissure in years.

Don't get me wrong, not feeling like I have a yeast infection 24/7 is awesome! But having skin tear from sliding over on a seat, having sex, and wiping is miserable. I still can't sit on a hard surface and can't sit for more than 15 to 30 minutes on a soft surface. The fissures cause stinging, burning, itching and shooting pains. All of which cause chronic pain. I would much rather have itching that open wounds any day.

The skin did get stronger with each procedure and I believe with two more treatments, the skin would be strong enough for the tearing to stop. However, to harvest more stem cells it would be an additional $3,500 plus $600 travel. If I went in for a 5th treatment after that, it would be $750 (for prp since I would have stem cells for three treatments from the $3500). Does that make sense?

It was emotionally draining to fundraise the first time and I am not sure I can go through that again.  I have accepted that my life will consist of chronic pain, I will not go into remission and in one to three years, I will probably be back to square one. My clitoris is gone from the disease as are many other structures of my female anatomy with saddens me to no end.

I was in so much pain a few weeks ago from a fissure, that I actually contemplated cutting just to deflect the pain from my crotch. I would not actually do it, but thinking about it scared me.

It seems a shame to come this far not to finish, but I feel like I can't ask people to help me out again. Why do I deserve it? What is so special about me? ~S