https://www.dropbox.com/s/e8htq26kd1knfdr/20150926_140017.mp4?dl=0

Hello blogging world! I have not posted forever, but will update you all soon. For now, here is a video my daughter and I made for my doctor to create awareness. -S

It's Thanksgiving week! Woo hoo! Yay for a three day work week. Update: Paylee has settled in and her dog run is complete!

I have made some lifelong friends at work and so far love what I am doing. Matt and the kids are hunting until Wednesday so I am working and just trying to relax. My flare has calmed down and I am dealing better with my pain level as my body adjusts to sitting for long periods. 

Happy Thanksgiving. I am truly blessed. -S

Paylee

Matt & I have been pondering getting a puppy for a few years now. We always said we would wait until we moved to the country, but this last month, we both had a feeling that now is a good time.

Matt grew up with a husky and was set on only that breed. I know they are big dogs and shed a lot, but Paylee will have a home outside and only be in when we are home. We decided on a Siberian Husky female as they are smaller.

We had to drive two hours to see her. She lives with an awesome family and has four siblings. We knew instantly that we wanted her instead of the other female pups. She was so little (4 weeks) and nuzzled in my neck and made cute pig snorting sounds.

We get her on Wednesday when she is six weeks. Matt has assured me we will start training her immediately and look at obedience school. We had a dog when we were first married and she was crazy! We got her as an adult dog and she had some serious behavioral issues :/

We got rid of our trampoline and turned that 10' x 10' area into her space. Matt bought a 5x6x10 log for posts and swinging barn doors as the gate. We need to build the dog house and we are done.

I know having a pup is like a newborn, so we have our work cut out for us. The good thing though is our kids are older ;)

Will look similar to this.

But using this type of gate.

Paylee at the farm.

Her mom. Pretty small for a husky!

I love her markings.

Changes

It's fall! My favorite month of the year.  The house is decorated and we are in full swing of everything fall :)

I work 8:30-5 for the next 5 weeks, then permanently go to 8:30-6. It has been difficult getting in the routine of dropping the kids off at school early so I can commute to Portland.  I work in the Koin building and love the people I work with, but traffic sucks. I get up at 5:15 and get home at 6:30. It will be 7ish once I start working 45 hours.

Luckily, Matt has two weekdays off and gets off at 3. This means chores, dinner and homework are done by the time I get home. The downside, we don't have one day off together.

Having a desk job has introduced some new challenges with LS. I now have nerve pain and have to go to bed right after work on weekdays. Sucky.

I am looking forward to this holiday season! Love this time of year ;)

-S

Our Little Free Library!

We built and designed this as a family and I think it turned out awesome! Basically, anyone can take a book, leave a book, or both. You can return the book or keep it. For more details, go to Littlefreelibrary.org.

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

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.

3rd Treatment Update

I finished my 3rd and hopefully last stem cell treatment (for a while) on 02/19.
Dr. Newman used the last of my stem cells and ended up injecting some extra to help reconstruct some areas that the LS fused and basically took away. I can't tell yet if it helped, as I still have some healing to do.  He also scraped two areas that were white and built-up from the LS. These are still raw, but healing just the same.

It has been 11 days today since I got the treatment. The swelling is pretty much gone, but the itching, rawness, stinging and heavy feeling on the perineum (when using the bathroom) is still very much present. I also can't sit on hard surfaces without discomfort and can't walk for very long. It takes weeks for the stem cells to do their job and so I am patient and looking forward to the weeks ahead.

I am very blessed to have stayed with my brother Brooks in L.A. My other brother, Bryan, just moved there with his family and so we got to visit with them as well. I am so grateful I don't have to worry about hotel costs when I go. 

Matt went back to work today (from FMLA). It was so nice to have him home helping with meals, the kids, activities and general household duties. I am definitely a grateful woman.

I am so hoping that this will be the last treatment and I will go into remission in the next few months. Since I have not had luck with doctors in the past (other than Dr. Newman), I have decided to see a naturalistic doctor in order to prolong my remission and do everything possible to heal.  Keep in mind that the stem cell treatment is not a cure, but rather a therapy. Now the challenge is, to find one that is very knowledgeable in LS. As I have mentioned before, the remission for patients has been typically 1-3 years. Three years would be awesome, but, I could only have relief for one.

I can't imagine fundraising again. Hopefully one day in the future, insurance companies will cover the treatment LS patients don't have to cover the whole cost.

I have noticed some nerve damage (probably from the constant tearing of skin). A few patients are on nerve blockers and I may look into that eventually. Even with the treatments, many patients can't sit for long periods of time (desk jobs), so I am also hoping to find a job that will fit with my needs.

I still can't believe that I have this terrible disease. While I am so grateful for
Dr. Newman, his staff and all the people that made it possible for me to get treatment, I am fully aware that I will have rough roads ahead and I pray that I have the strength to get past them. ~S

Mom Groups

I haven't done a "normal" blog post for a while, so here it goes.

I finally got a shower - at eight p.m. Only this time I did not have a six-year-old ask why my boobs are "hanging like that" or "what are all those race car marks on your belly?" No, this time I took a shower in a quiet house. I shaved, lotioned and even have time to type this. 

     

When you are a young mom, you think that things will eventually get better, easier and you will have more time for yourself. Reality check - you. do. not. 

This morning I woke up at 6, got two grumpy girls off to school, checked my email, got my son off to school, had enough time to make myself presentable to pick one daughter up for school, have a phone interview, run the lunch money my son forgot to his middle school, pick up my kindergartner, hit Marshall's because my daughter needed a dress for Sunday, the pet store because my youngest had to see the fish (what is it with fish? Is it me or are they incredibly boring?), Costco because of course we are out of cat food, back to pick up my other daughter, apply for jobs, son gets home, homework, chores, fighting, wash the "ugly sweater" I picked up at Goodwill for school tomorrow, then make husband take kids swimming so I can have an hour to myself - and to shower - alone. Did I mention we have not had dinner yet? I can't wait to throw soccer practice four days a week into this mess and work.

I know people always say, slow down, enjoy these times because they grow too fast. True. However, your role as their parent never really eases up, it just evolves - and I need a break.

I have noticed lately that there are many "Mom Groups" on FB for young moms. What about the mom's in my age bracket (elementary and middle school)? I need to form a "Your preteen is about to head into dating, drugs, driving, friends -  and your daughters fight, make-up, fight, make-up (repeat ten more times) in one day, I am going to go insane, wait until they both start their periods, kill me now" group.

And then there is exercise. I really need to start working out again. Today I put a picture of a Lego guy lifting weights on my phone's  "Home Screen" to try to motivate me to workout. I will let you know how it's working for me. Right now, all I want to do is eat black licorice. ~S

Positivity vs. Negativity

Thanks to many generous donors, we are headed to L.A. in February for the last treatment. Hurray! Thank you to all that bought t-shirts and hoodies as well ;)

I wanted to briefly discuss my role as the beneficiary of this money and the expectations that people have.

First off, we have been fundraising for a little over a year (14 months to be exact). During this time, there have been many, many sleepless nights.  I have felt overwhelmed, in despair, and have wanted to give up. I have also been blessed by complete strangers donating and people coming together for ME.  I have not taken that lightly.  I will be forever indebted to all of you AND guarantee I will pay it forward. You have seen what I can accomplish sick, wait until I am healthy! Ha!

I grew up with two sick parents and I know from experience that it can be devastating and stressful on children. I made a promise long ago that I would shelter my kids from my disease. Yes, they are aware I have it, have seen me not want to get out of bed, stay in the car instead of run around with them at a park, cry after throwing them a party because I am in so much pain, BUT I never want to tell them NO, we cannot feed your spiritual, physical or emotional need because I.am.sick. If I do, what is that teaching my daughter who has LS?

Therefor, when our kids wanted to play soccer, we made it work and their team paid for certain things to help us out. I cannot tell you how much it lifted my spirits to see them play a sport (their first). We had Christmas, but on a much, much smaller scale. I gave them our traditional Halloween party with friends, but we did it potluck style to cut costs.  We go on family outings, but not without a coupon or money saving deal. We went on vacation, but went camping with friends to keep costs low. What am I getting at here?

Even though you have an illness and may need treatment, you still have to LIVE. Matt and I still need an occasional date if we want our marriage to last through sickness and unemployment, and we still need a family vacation after ALL OF US have tirelessly handed out fliers and worked fundraisers for months.

There are some people that think that we should be spending NO money at all - Not on anything. To those people, please don't donate if you are going to put my family under a microscope. Recently someone made the comment that Matt and I should not have gone to a movie last week (one of many comments they have made). We had passes that my brother gave me for Christmas. I should not have to justify that.

I firmly believe that you should not judge the life of others. You may be on the right path, but you cannot think or expect that your path is the ONLY path.This road has been hard on everyone. My husband feels like a failure that his policeman salary cannot pay for it, my parents feel horrible that they could not pay for it, and the list goes on and on.

We have really learned who our true friends are this last year. Those who give and continue to give, with no expectations other than seeing me healthy and trusting that I am a good steward of their money or services.  There has been so much love, compassion and support over the last year and I try to focus on that, not the negative.

Thank you to the 99% of you that don't make us feel guilty or temp me to run to the bank and give you your money back (Ha!). I have discovered that I have a whole community of people that have my back and want to see me healthy. I like to think of myself as a giving, compassionate, "give you the shirt off my back" type of person and I want to surround myself with people who know ME, believe in ME, and that will send me positive vibes during this healing process. Thanks to all of YOU. Lord knows if you were in my place, I would move Heaven and Earth for you. ~S

Good News!

It has been almost three months since my first Stem Cell procedure. Things I have noticed: My fissures are still there and occurring at the same rate, but they heal in weeks instead of months time.  My itching is pretty much gone during the day and I only experience discomfort at night (perhaps because my body is hard at work trying to repair itself?), during the day I will have occasional stinging or burning, but the disease does not control my thoughts anymore.

I can sit on hard surfaces! Hurray!

Also, for the first time in eight years, I did not have a flair last month before my period!!!!!

I am so excited for the next procedure on November 14th. I know that I will have even more results after the second one.

Financial wise, we have enough for the second one, but are short by about $1250 or more for the last one sometime in February :(  Not sure what we will do. Thoughts?

~S

Falling Deeper & Deeper

I wish I had better news today. I was hoping that by this time (4 weeks out) I would have more positive things to report.

Lately, as each days passes, I fall deeper and deeper in a dark hole.  I have days full of hope, productivity and find myself laughing, then I have days like today where I feel absolutely worthless as a human being.

I am still unemployed (I have an interview next week and am in the second process with another employer) therefor am not contributing financially or to society in any way. I am not a good wife as Matt has had to take care of the house on my bad days as well as the kids. I am not a good mother. I cannot bare to leave the house, let alone take the kids to a park or much of anything else. I am not a good friend and find myself pulling away more and more each day.

Perhaps I thought of this procedure as my last hope of a quality of life and now that it is not happening, I am in complete despair. I know that I need to give it time, but I am having pain that I have NEVER experienced with LS to this degree.

It hurts to sit, walk or even put on clothes. I have a constant burning and stabbing pain that is unbearable. I itch and am raw.  The burning to this severity and length is new. New! Thus why I am feeling like I cannot be helped. Accepting that this is my life, there is no cure and this procedure (after all the work this last year to make it happen) may be a complete fail, makes me want to give up.

I still have the same fissures that I had the day of the procedure. Frustrating. I am supposed to call the doctor in one more day if I have not improved. And then what?!

I am usually a pretty positive, productive, suck it up and deal with it person. Most people who found out I was sick were shocked. I want to be that person again, but am finding a hard time finding her. I feel disconnected, alone and full of stress.  Financially without my income, each week we fall deeper in debt. I am praying I get the job I am interviewing for next week as it is an online college course and working from home seems like a better option for me until I receive more treatments.

The last few weeks, I catch myself looking at "normal" women thinking, "She would be a great wife for my husband."

Living with constant pain is wearing physically, mentally and spiritually on me. I feel like I am too young to deal with this and with no cure in site, it is nothing less than devastating. I am beginning to feel like a burden to my husband.

My whole life all I have wanted is a career, busy life and to contribute. All of those things are crashing down and my disease is swallowing me up.

Pray that tomorrow I will find hope again. ~S

Doubts & Fears

It has been 2 weeks since I had the Stem Cell/Plasma procedure.

I realize that Dr. Newman said it would take 6 weeks before I see the full results, but life is hard with LS during that time.

Each day is different.  My swelling has decreased significantly and I am seeing a reduction in the scar tissue by at least 50% - great news.  However, the itching, burning, stinging and not being able to walk without pain after certain activities is still there full force.  Some days, I am near tears.

I am not fissure free, cannot sit on hard surfaces and am fighting the urge to crawl in bed.

Matt is home for another 5 days.  I am booking my next procedure for November and it will literally drain my donation account.

Right now, I am focusing on finding a job. Matt is also seeking a second job.  I have been unemployed from my job (the second one, the other one ended in June) now for exactly two days.  I am expecting depression to set in momentarily as working got my mind off things and made us not in the category of "living paycheck to paycheck."

Today is not a good day. My disease is reminding me of its existence about every three seconds.

My hopes are that after the three procedures, I can go at least a day without pain.

I am also feeling lonely as I am a somewhat social person with work, volunteering and friends.  Since my procedure, I have been house-bound which is not good :/ I find myself fighting off tears daily. I am trying to be positive, but sometimes it is just plain hard. ~S

Fundraising Update

Update: I have enough in the bank to get me to the second procedure in L.A. in November. I am about $1250 short for the third and last one to be done sometime in February or March.

Feeling Good

Today is day 10 since I got the procedure done.

My stomach where the stem cells were harvested is faded to a yellow bruise. I am supposed to wear the compression garment for a few more weeks.  The injection site is healing well and the swelling has subsided.

Last night it hurt to lay sideways as my thighs would compress the area and I had shooting pains. I need to ice more :/

I started using Dr. Newman's cream called Luminesce for the itching and it seems to work wonders.

I have my next appointment scheduled for November 14th.  I have enough in the bank now for the entirety (travel, rental car, plasma) for that trip ;).

I am still looking for employment as my teaching job ends Friday. Say an extra prayer.

Matt is on FMLA to help around the house and with kids.  They are keeping busy and having fun.

I cannot believe it is almost time for the kids to start school!