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

Monday

Today was insane.

Ash came home at 10:30, I had an interview about 40 minutes away at noon, we rushed Matt to work at one, the girls had two friends come over at 3:30, homework, dinner, chores and bed. As my dear cousin said today, "Raising kids is like being pecked to death by chickens." Haha!

I am thinking of writing a book. There, I said it. Perhaps now I will actually do it.

I belong to a support group that doctor Newman put together of LS patients. Before this group, I knew only one person with the same disease (in Idaho). I am grateful for these ladies. They make me laugh, are the only people who can really understand what I go through and are my rock.

Here are some descriptive words of LS that we have been throwing around. Some make me laugh because they couldn't be more true.

LS is like: A blow torch on your rear, sitting on a cactus, red ants chewing at my..., sitting on crushed glass, thumb tacks being pushed into the nerves, acid being poured on my........., and a yeast infection 24/7.

Not a great way to live. Not to mention the fusing and mutilation of the structures. It is a horrific disease and I pray, hope and dream, one day there will be awareness, research and funding so insurance companies can help with the stem cell therapy and so many women will not suffer in silence. We are toying with the idea of going around and doing some public speaking to women about LS - great things are in store!

On an end note, my mothering story for today is...
Rushing home from my husband's work, with my 6 year old in the backseat (she's trying to hold in a bowel movement, while also saying she felt like barfing), trying to not barf myself since I had left the house with only coffee in my stomach, hearing her say, "Mom, drive fast! How far away are we?! It's coming out!" Bahahahaha! Kids!

~S

February in Pictures

Rare Oregon Snow

Olive turned one! (A few weeks old here)

Daddy-Daughter Dance

Friends! (Ash far left, Maddie far right)

Jaiden at Scout Campout

Our traditional Valentines Party

Maddie's new bed that Matt built.