Thursday, August 26, 2010

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!


  1. Good morning, I am very concerned about my sister. Reading this blog has helped me with her situation. She has freckles and cafe au laits all over her body. Now she is 18 and she has learning disabilities, depression and maybe bipolar. She has a bump on her head which we were told it was a tumor and was extracted but its growing back. I remember she use to fall a lot and we would always think this was because she was clumsy. I need to ask if someone could please help. The doctor has already diagnoted her with NF but did not give her any kind of medication. What should we do next. Please help, Thank you.

  2. I remember middle school in Poway (you were living with your father then.) I remember you friendly and smiling with awesome oh-so-adult fingernails (for a brief period of time.) I had no clue what was going on in your head, what you were holding back. I'm sorry you went through so much alone for so long. I won't say much more than this because the past is the past. The benefit of remembering it is that it informs our present and our future whether we acknowledge it or not. What I will say is that being remembered as smiling and friendly shows that even if it was in secret, you knew what it was to have "grace under fire" at a young age.

    I am glad that you are not only free now to say how you feel, but that you extend this freedom and comraderie to others who want it. Share the wealth. Thrive on!