Hello Again

I have not blogged for a while. Not sure why. Probably a combination of nothing to say, busy with work, Thanksgiving & being sick. So here is a little update.

My first fundraiser started last week. I am sure the Christmas tree fundraiser will be successful as the nursery is doing their own advertising as well as my own that I have done. The Shiraz dinner is in a few days :). With a promised donation from a friend, we are up to just over 2k.

I got a Starbucks gift card from a fellow professor via email today. So nice ;)

I am feeling better. I still have the cough, congestion and mild sore throat, but with each day I am feeling stronger.

I have the inside of the house decorated for Christmas, but we still need to do the outside and cut down our tree. I am hoping to do that this week.

I spent Thanksgiving weekend editing 85 pages. I ended up going to the office last night so I could go to a fire station field trip with Ash today :)

Tomorrow is my husband's 34th birthday. He took the night off, so after I get done visit teaching the women in my church, we will have the day together :).

I am so grateful for friends, complete strangers and family. Many people say they are giving, do charitable acts or other services, but until you actually need help, you don't fully realize who those people are. So many people have power in utilizing their connections, community or simply just adding people to the FB page. Awareness is the first step with my disease and I am grateful for every one's help and those that are still in the process  of spreading the word.

I hope you all have a wonderful Monday. Here are some pic's of what we have been up to :)  ~S

Halloween 2012

At the Marsh house for a party.

Finished wood upstairs.

 

Pinkalicious with Gwen

Our "Elf on the Shelf" came.

Wrote letters to Santa.

Thanksgiving 2012


 

Weekly Update

This last week has been a roller coaster of emotions.

I had to grade 65+ psychology finals and start a philosophy class as well + editing.

Last night my friend took me out to dinner and to a movie. I was appalled that a little girl that could not have been more than 4 had been at the theatre since 11 am (I got there for the 10pm showing) for the Twilight Saga.

As I was watching the movie, I was in shock that a mother would subject her child to the violence and sex scenes (although mild) in this movie. Some people should not be parents :/  The crazy part was she kept getting mad at her daughter for not staying seated (keep in mind that she had been watching movies ALL DAY) and I had to hear this little girl keep saying, "mommy it's scary!"
Wow.

In other news, I am so blessed to have so many people doing fundraisers for me (a few complete strangers).

So far this is what we have:
Christmas Tree Fundraiser
Shiraz Fundraiser
A designer doing a special card for the online boutique
A designer doing a special pair of earrings dedicated to the cause
An author donating a portion of her sales to the cause
An online boutique in the works from my friends in Utah
A Scentsy party planned with a portion going to the cause
A 5k planned for the Spring
A plant sale at a nursery planned for in the Spring
My friend in Kentucky is donating 20% of her jewelry sales until after the holidays

I am truly blessed. I have faith that I will be able to get my first treatment by the summer :).

~S

A Fresh Start

I woke up this morning feeling hopeful.

My friends have been busy and I am humbled by their willingness to help the fundraising efforts.

One friend is in the process of inquiring about designing jewelry specific to the cause and another just created an online boutique for Hope for Healing.

Just when I wanted to give up, my friends are showing me the love and support I so desperately need.

So today, I am grateful for friends.

In everyone's life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit. ~Albert Schweitzer

Why?

I have no idea why I am awake, and crying. Perhaps I am thinking too much. Stressing too much. After all, my charade is crumbling. I am no longer the strong, independent woman I have portrayed for so many years to be. I am exposed, vulnerable and instead of getting a sense of relief that my secret is out, I am in utter despair.

Why? Because I am mad. Mad at the world. Mad at life.

Why have I been dealt this card? Why oh why have I been doomed to a life of pain and discomfort?
Why after working my ass off in school am I destined to beg for money to get myself the treatment I have dreamed about, hoped for and only imagined?

Has life not been hard enough? I am not a believer that God gives us challenges we must face. But rather that he knows of our struggles and believes that if we have faith, we will overcome them and accept them. I cannot for one second believe that a God would give me a rough start to life with seizures and struggles, LS as a toddler, followed by a mother with a mental disorder and a father with Parkinson's. Have I not walked my road yet? Have I not come out a stronger person? Learned to take the higher road? To put my best foot forward?

Part of me wants to give up. To crawl back into that hole of bliss where I put on a happy face and present myself to the world as this perfect house is clean, kids are well behaved, happy kind of existence. Not the woman who cries alone at night and asks why over and over. The woman who takes a sleeping pill just so she won't wake up digging at herself in misery and waking in the morning once again reminded of the chronic pain that each day brings.

What I wouldn't give for a full week where I do not think about my disease every second of every day. ~S

A Glimpse

My mom seems to think I need to better explain my disease or the reality of it, so here it is:

I cannot remember what my skin on my vagina looked like before the disease.

When I do look down there, I cry. It is disgusting.

I have damaged, deformed, white skin from scar tissue, huge fissures, some as wide as a pencil that are raw and red. I am ashamed of how it looks.

I cannot believe this is happening to me.

I cannot understand how my husband still wants to have sex with me.

I tear a new fissure or split open an existing one each and every time I have sex. It stings and burns and I can actually feel when it splits.

I have learned to deal with pain daily and not complain until I have a breakdown and cry uncontrollably.

I itch all through the day. Just imagine a yeast infection 24/7.

I avoid public bathrooms as I am afraid because of my open cuts, that I will get germs or an infection.

I cannot have a bowl movement without splitting.

I now use a bidet as wiping with toilet paper makes me split as well.

Wearing pants rubs, so I often wear baggy jeans.

I hate the heat because once I start sweating, I itch.

If I am shopping, walking, sitting, talking or sleeping, I itch.

I wake up scratching in my sleep and the next day my skin is raw to the point that I cannot even tolerate water on it.

Any ointments or creams make the "bugs crawling" worse.

I have seen over 20+ doctors. None of which know how to treat me other than with the steroid Clobetesol which has thinned my skin too much.

Pain pills do not work as it is an open cut. Just imagine a huge paper cut that someone has poured salt on. Again and again all throughout the day.

I honestly can say that if I did not have kids and a husband, I may have contemplated suicide.

I cannot believe that I am only 36 and will have to suffer with this disease for the rest of my life as there is no cure.

I will eventually get skin cancer and part of me just does not care. The only way you could understand this is if you had LS too. There is no break from this disease.

Sometimes I don't want to get out of bed. I get sick of telling my kids why I can't ride a bike with them, walk to the park on my pain days, go swimming (as I hate the idea of a public pool with my open fissures) or do any other activity that puts pressure or rubs.

Despite all of the pain, I try to do my best to be a good mom, friend, daughter, sister and wife. I refuse to let my disease define me.

I find comfort in doing good deeds for others. Serving people brings me joy and makes me "forget" about my life and the chronic pain I am in.

No one can know what I am going through or what I am yet to go through. I hate the feeling of having to "justify" or "explain" in detail what my disease is like to other people. If you know me, you know that I hate appearing weak or complaining.

I have always been a caring, giving person. I have spent most of my life serving other people whether it be known or secretly, I always do it with a charitable heart. I do not expect anything from anyone. Rather, I am hoping that in my time of need, my friends, family and community will help me to get this treatment. If not, I will find another way.

I am trying to remain hopeful, but this whole process over the last week has been nothing short of stressful. Setting up fundraisers and explaining to a ton of people what LS is has taken a toll on me. I have found that stress causes flare-ups, so the next week or so, I am taking a break and am just going to see what happens.

I hope all of you will consider donating. Even $5 will make a huge impact. I also hope to see you at the Christmas Tree Fundraiser and the Shiraz Fundraiser this month.

Thank you to all of my supporters thus far. I would be lost without you. ~S

Life Changing

I had the pleasure the other day to speak with a wonderful woman (the same age as me) who just finished up the stem cell/plasma procedure for LS two weeks ago.  It was life changing.

She is the first person I have ever met with LS. I cannot express how it was to talk to someone who can relate, knows how I feel, the pain I experience and all of the struggles. We spoke for a long time.

Before I spoke with her, I was having mixed feelings about the procedure (how will I ever afford it, can I tolerate the pain, is it the right thing to do, and so forth). After I got off the phone, I had made up my mind and felt peace with my decision to move forward with the procedure.

I felt like I had known this woman for years. I hope we can continue to keep in contact and I hope that one day our families can meet. I am sure my husband would love to talk to another spouse that can relate to him as well.

She answered all my questions about the procedure and I hope that my outcome is as great as her (she has an 80% improvement with flare-ups occasionally).  She gave me some great advice and I was in awe at her strength.

The procedure sounds very painful as I will more than likely have over 60+ injections, lipo suction to harvest the stem cells, all while awake with a mild sedative. I am scared of the pain, but know that I will find it in me to get through it. She said the first procedure takes 4-5 hours. That is a lot of time to be in pain. It is unknown how long the results will last. Perhaps I will only have an improvement of my symptoms for a few months or years, but it would be worth it to get some quality of life back.

I don't want to get my hopes up in case we do not raise enough money or it takes a long time for me to actually be able to get the procedure, but I am trying to remain hopeful.

I only pray I have as good as an outcome as her. Dear friend if you are reading this, I am so blessed to have met you. ~S

Donation Account

An account has been set up in my name (Sherrie Utley) at US Bank for donations.

You just need to go to a branch and say you want to make a donation in my name.

I appreciate all of your support!

Hopefully, I will be able to get the first treatment this summer or sooner!-S

Fundraisers

Well blog readers, I have gone live. I have decided to do the stem cell treatment.

My very good friend Shanon has set up a fundraiser at a local Christmas tree farm. We are in the process of getting flyer's ready.

I have two other friends with businesses that are willing to do a fundraiser as well.

We are setting up a bank account for donations and I will see if I can put a link on this site.

Part of going "live" is having people ask for details.

It is hard to admit that I have something wrong with me and I can't fix it. Darn you mom & dad for raising me to be so independent!

I am hoping this climb of raising 7k is not as daunting as it seems.

Here is the flyer from the current fundraiser :).

FUNDRAISER FOR SHERRIE

Sherrie’s friends are partnering with Mountain View Tree Farm for a Christmas Tree fundraiser.

Mountain View Tree Farm is a local tree farm with Douglas Fir trees ranging in height from 5’-15’ and Noble Fir trees from 3’-6’.

Each year the profits from their public U-cut are donated to local charities. This year they are helping us raise funds for Sherrie’s medical treatments and the travel costs associated with these treatments. All U-cut trees are $20 for any size and 50% of this will go to a medical fund for Sherrie. There will also be free cookies, cocoa, and a small Santa’s Workshop with items to purchase.

The U-cut will be open on Friday, November 23rd, Saturday, November 24th, and Saturdays December 1st, 8th, and 15th from 9am to 4pm. Other times are available by appointment. To make an appointment for a different time, please contact Aaron at 503-615-5800.

Location:
Mountain View Tree Farm
30393 SW Egger Rd
Hillsboro, OR 97123

Thank you for helping us with this fundraiser!
We hope you have a wonderful holiday season and a happy New Year!

Miserable

Part of me getting the LS stem cell treatment will be to do a fundraiser. This will mean that I will have to go "public" with my disease. The first step is to "show" people why it is imperative that I get help.

I currently have three fissures (two pictured below), that are almost as wide as a pencil. It hurts to sit, walk, move, wear clothes, wipe, use the bathroom and shower. Any type of ointment only irritates the "bugs crawling" feeling and itching.

Despite having these, I still had our Halloween party (although I really wanted to cancel), took the kids trick-or-treating and am doing everything that entails being a mom, wife and working my editing and teaching jobs.

I have not wanted to clean my house, visit teach or get out of bed. Just cry and feel sorry for myself. I hate feeling that way.

Yesterday, due to pain, I cried and felt hopeless. Sometimes, I just want to give up. My quality of life sucks and I can't remember when I was not in pain or uncomfortable.

I wish I could say that the treatment would take my pain away, would cure the itching and stinging, or stop the fissures, but it will only lessen them. That is something though, right?

Here are some photos of my current fissures.


Two that are almost connecting on the perineum.
 



Close-up of upper fissure. You can see how deep and wide it is. The skin around it is damaged as well. All the cream colored skin is from the LS and scar tissue. This is where cancer is a concern.