Monday, September 14, 2009

Turn it around Tuesday

I brought our son to the Genetics Doctor today....I cringe every time I have to see this woman. She is cold, and really ticks me off with her drab look on life. I am thankful we only see her eveery 6 months.

We went through family history, pregnancy and the issues Braden has been having. Dr. Martin reviewed the MRI results, and told me she wasn't optimistic about the "mental future" of my son. Nice phrasing, Mental Future....

Who is she to tell me about my son's mental future? How dare she put my son in a box and slap a label on him.

For years I have listened to doctors, and have taken what they say as the final answer. But that time is over....Who will stand up for my kids, if I don't? I looked at her and asked why she generalizes NF. With this disorder like Neurofibromatosis being so variable, I wondered how she could possibly know what my child's mental future would be. She had no answers, just general statistics.

I told her that parents who come into her office, are seeking not only a diagnoses of certain disorders, but they often are searching for some kind of hope...something or someone to give them a guided hand through darkness....and that the only thing I got from her was a label. One that I refused to have my son wear.

I have a close friend who has also visited this same doctor. Her son, was diagnosed with a heart condition. After leaving the office, this mother was drained of hope, and filled with fear.

Yes, it's the Drs responsibility to inform us of illness, and give all of the possible outcomes, but it's not their job to instill fear in their patients. We put our trust in these people, and just want to be treated like we are human. What about telling us of the ones who defy the odds of the typical diagnoses? Why not offer resources and places to go, to find others, who can help us find the hope we so desperately need?

Her response to me was for me to join a support group....Yeah okay. Very good advice, and I recommend this to anyone who is dealing a fearful position in life, to find support. But what I also recommend, is to not take your doctors word, as the final word. What they know, they learned from books, and general statistics. Slapping a label on their patients and filling in the check marks and sending us on your way, is NOT a sign of a good Dr.

Fight back. Ask questions. Don't be afraid to talk to your doctor. If you are like me, and got some bad luck with doctors, kick and scream until you are heard! Find someone who will listen...because there are Drs out there who really do care (thanks NIH)


  1. Tell the world what you think:

    lf l had to pay for them; l would shout lt from the rooftops!

  2. Hope you told that Doctor to screw off. In similar news, my "guidance counselor" in High school told me not to bother applying to the college I ended up going to because I wouldn't get in, and I polietly told her I was going to do it anyway (even though I wanted to tell her to eff off) and when I found out the school was closing, I went to the school to see her, and ended up writing her a strongly worded note, telling her "I hope you never tell a student they can't do something again" or "how dare you" or something like that. Anyway, my point is, don't take crap like that from authority, and when you prove them wrong, you can rub it in their face.

    Man, I hope she got that letter.

  3. I agree with your every word.
    If we don't stand up for our own kids, who will? I'm typical Japanese who avoid stressful circumstances(I still do sometimes....)and I learned it the hard way.
    At school, at doctor even at church.
    We know our own kids more than anybody!
    I don't mean spoil them but,sometimes, we need to stand up for what we know or believe!
    Kristi, thank you for doing this!

  4. I don't trust doctors. Period. They think they know everything and they are dead wrong a good percentage of the time.

  5. as, for that bitch of a Dr. bot have i had my share, just like we're cattle. mov'em right along "we" can't do anything but monitor every 6 months. my "mom" did nothing at all I went in in 1970 had surgery @ 5yrs old. and shenever ever took me back to see a neurologist again. I was finally seen again when I was 17 by a guardian who worked at Columbia Presbyterian in NYC.they told me a load of crap and and I had to go alone and be told a zillion horrible the time my neurologist told me "oh I see u had the abortion" I became pregnant in 1986 w/ my husband. she was planned to the day, funny her name is april and was conceived in april. anyway I was a tiny skinny girl who was told "there may be complications" and that and abortion would be the best thing to do. I have a beautiful 22 yr old daughter w/o NF1 and wouldn't have it any other way !! she is not affected, but I worry they say it skips generations.My siblings are NF free and my sister's kids too !! although I don't know if it's inherited or a muted gene, I hope it was just something that happened.I do not wish this on anyone but my parents who never had me followed for 12 yrs every 6 months. I do not believe that my mom was not told this.she is a weak and guilty woman who didn't know her biological father, and my dad who was useless didn't know either of his biological parents. so I can only wonder what happened to me. the get over it people in my family have no clue.I do wish for them to go thru one day in the life of "ME"they would then know that this is not just a disfiguring issue. it's an emotional, physical,spiritual,trying, not knowing illness that always keeps u wodering what next ? I have since found some good compassionate drs. that trat me very well, they take the time to LISTEN a word most drs. do not know about.Like the dr. @ NYU that told me my surgery would pay for his kids college ! yes, he did.and the tumor just grew back and caused arthritis, and scar tissue pain. so now I wait for yet 4 more mri's 3 x-rays ,a spinal cord stimulator trial, a knee reconstuctive sugery, an akle surgery, which has already had 4 surgerys already the knee 3 and the spine 1.finding a good dr. is very hard. you have the clinical drs.the compassionate drs,the I don't know anything about this drs.oh yes and the counselors that are suppossed to understand something that they haven't ever heard of !we have good people out there we just have to really look and that's hard even here in New York !! so, NF'ers hang tough and just say no to those drs. don't let them tell you just that clinical book story ! because everyone is different. I didn't have alot of systems until my pregnancy brought out so many more subcutaneous tumors, more bumps but no one told me that they could have grown on the inside. they didn't check.I'm really a stronger woman than most and I think I do have a purpose on this earth. so I tell u all that I do not let drs. give me the spiel that they do to most people w/ NF1. and neither should you !!haven't figured out how to send this with a URL address so I send it like name is Marlene becker I follow on twitter as marlsunshine@ wishing you all well, thanks