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