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