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