Here We Go Again!

This week we re-start chemotherapy.  A three week break was nice.  The Vinblastine, although lower in dosage then the last treatment, has a harsh affect on Bailey's body. She has lost about 15 pounds, and also lost a considerable amount of hair.  She has mouth sores, and body aches.  Her skin is blotchy and pale.

I think these side affects bother ME, more than they bother Bailey.  I see my daughter transforming, it's scary.  But, she seems almost unaware of all that is happening...All that could  happen.  Maybe that's a good thing, I don't know.

The whole world of chemotherapy, is a strange one.  Anyone who has experienced any part of this world, knows what  I'm talking about.

It's like the moment you walk into the hospital and ride up the elevators, everything "normal" stops.  Your world morphs into something unrecognizable.

Life becomes all about numbers, and needles.  Good days and bad days.  High fevers and hospital stays.

Dealing with all this "stuff" is hard for even the strongest spirit.  Sometimes, I silently ask God what the point of all of this is.  Why Bailey?  Why now?  And when will we finally see the light at the end of the tunnel?

It seems like ever since 'Thriving with Neurofibromatosis' began...The whole basis behind it gets tested, over and over and over.  How can I keep up?  How can I keep my focus that the "light at the end of the tunnel", lives inside each one of my kids?

I guess the answer is to just simply do it....and as always THRIVE ON!

I'm Rubber...You're Glue!

"I hate school Mom, PLEASE don't send me back there!" This was the text I got from my daughter this morning. It's the second week of school and already the vultures are decending on my 8th grader.

My daughter has always been socially akward. She doesn't fit in it and oftentimes can be found sitting alone. She is quiet and shy and has a hard time initiating any type of conversations.

The complaints I get from my daughter, have been the same since Kindergarden. "No one likes me." "No one wants to hang out with me." "They call me ugly." "The girls whisper and make fun of me behind my back."

This is all too familiar to me. I had a horrible experience in 8th grade. Being the new kid didn't help. I was always "different" than my peers. Chubby, with glasses, I was a prime target for endless teasing.

Until one day, I chose to stand up for myself. I was done with the rocks being thrown at me. I was done with the fat comments. I was done being the subject of many jokes.

I remember that day. Hot faced....I felt the power and courage fill within me. I whipped around, took my glasses off and asked this boy why I was so important to him, that he had to go out of his way to make me feel like crap.

He really had no responce, but I told him to grow up, and that one day he would be bald and fat, and may end up being on the receiving end of some cruel jokes. I told him to spend his time on something else, because I wasn't going to let him affect me anymore.

Eventually he did stop, and I had a pretty good year from then on. But did I really let go of him affecting me? To this day, I can remember how I felt...I relive the power this kid had over me over and over...so much for letting go, eh?

Even now, I find myself wishing... "If only I could have flawless skin and be thin...maybe people would like me." "If only I could have enough money..." "If only I could have a better personality." If only....

The teasing and bullying never really stopped for me....because I still let it affect me. I let what other people think of me, control my attitude and even what I stand for sometimes. I find myself trying to live up to the standards that other people set.

As for Bailey, all I can do is love and support her. She has the strength to overcome this. I am trying to teach her (and my other kids) that they are beautiful and strong people.

When kids bully and tease, I want my kids to know that THEY aren't the problem. It's not their fault. Some kids just need to feel in control...they like the power they get from picking on someone. They think it makes them inportant...or popular. Sometimes kids do this, maybe because it's the way they are being treated at home.

WAYS TO HELP
*Create a buddy system (strength in numbers)
*Really listen to your child, let them vent
*Contact the school

I know that my daughter is in pain. It hurts me, that she is hurting. But as her parent, I have to help push her fwd, and continue to encourage her. (even though what I want to do, is pull her out of school and protect her)

Sweet Bailey, those that matter, know how precious you are. Those that matter love you and support you. Those that matter will be by your side.

Life with Pain....

As long as I can remember, I have had pain. I remember one time when I was 8 yrs old. I was in 3rd grade and fell out of my chair. The children were laughing at me, and I couldn't get up off the floor.

The room was spinning and I felt sick to my stomach.

I remember looking up at the ceiling, feeling like I was on a boat. The rocking and swaying confused me, because I knew everyone around me was standing still. The teacher grabbed my arm and pulled me to my chair.

I layed my head down on my desk and shut my eyes. This was the first time I had ever experienced something like this and it scared me. The dizziness finally stopped and I was able to join my friends who were playing outside.

Episodes like this were few and far between, but when they would happen, they would send me to the floor, grabbing my head. Phone calls to home, from the school, went ignored. My mother didn't have time for another sick child.

Mom worked hard. A single woman, who was not only dealing with Mike, who had NF, but she was also dealing with her own deteriorating health and she didn't have time for more issues.

I stayed quiet for the most part. I was not diagnosed with Neurofibromatosis (yet) As far as my mom was concerned, I didn't have it, so she didn't have to worry. Even tho the doctor who had diagnosed my brother, also examined me, and the cafe au laits spots were noted, my parents were never told I also had NF.

My symptoms remained hidden. I was fearful to talk about anything I was feeling, because I never wanted to take away from Mike. He was the one who was sick. Plus what he was experiencing was scary to me, and I never wanted to end up like that.

When I became a teenager, the headaches and "episodes" got more frequent. I remember going into my sep-mothers medicine cabinet, looking for anything that said it was for pain. Luckily the only thing I ended up with was Advil.

I hid for years with my pain. Emotionally, Physically, Spiritually. I remember visiting the doctor two times as a teenager. (once for a wart, once for a girl scout physical)

I never talked about my pain to others, because I knew what it would bring....

It was not until my own diagnoses with Neurofibromatosis, that I would finally feel comfortable with expressing what so many others who also had NF were experiencing. It was almost as if this rush of freedom came over me.

I am finally free to express that I do in fact have pain. That it does not make me weak to talk about it.

Maybe if I had been diagnosed as a toddler, my life would be different. The endless suffering would have been "fixed". One can never know.

But here I am. A almost 36 yr old woman, living with Neurofibromatosis. I hurt on a daily basis. I am not ashamed or afraid anymore.

Thrive On!

Surgery Update

The post-surgical pain is easing, one week after surgery. It's hard to believe that a week has already passed.

I still feel shooting pain through my finger. I'm not sure if this is normal, but it kind of worries me, because THIS was what I was dealing with before the surgery. The gauze is stuck down on my nail bed, but finger definitely is healing up.

I'm still having pain in my right pinky finger and left foot. It frustrates that the MRI didn't pick up the tumors ... but maybe after we move, I can find a DR. who will take me and the NF on, and we can figure out why I am having so much pain.

I had to take a percocet today....not for the surgical pain, but for my headache. I was scared to take it because part of me felt it was a failure on my part, not being able to deal with the pain. I know I have to get over my fears, and accept the reality of taking medication to treat my symptoms, but it's hard.

I watched my mother struggle with addiction to pain medication, and I saw it transform her from someone who was talkative and playful, to a lifeless, and tired body on the couch.

I am very cautious about what kind of medication I put into my body, but I also need to learn, that sometimes it's okay to take something to relieve the pain.