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