What Makes You Think You Have NF?

I just got back from the Drs.  I swear, I have seen the Dr. more times in the last 6 months, than ever before in my life!  This wasn't for NF related stuff, surprisingly.

I have ulcers....Thanks to a little bacteria in my blood called H-pilori.

I've been having a lot of ulcer-related symptoms, so I thought I'd go in and get it checked out.

The tiny office I go to was swarming with other doctors...Most of whom I have never seen before....Some sort of conference was going on, I'm not sure.

Anyways....I get to my room (but first stopping to weigh myself...And I have to say that I was actually excited to step on the scale!  I have been TRYING to lose weight actively since February of this year and been pretty successful at it!)  

The nurse tells me to strip down from the waist up and wear the lovely paper napkin shirt...So I do as I am told and sit on the exam table for what feels like an hour....

Wait Wait Wait

A nurse pops her head in to ask me if it would be alright if one of the visiting Drs comes in to "have a look at me".....She goes on to say that "Neurofibromatosis is SOOOO rare, that some of the doctors were wanting to see me....." 

Gasp!  NO WAY!  AN ACTUAL LIVING - BREATHING PERSON WITH NF!

I smile and say- "SURE!"

A few minutes later, a handful of nicely dressed doctors come into the room, squeezing around the exam table.  I shake hands with a few and smile my sweet....(great I'm a guinea pig) smile.

"So...What makes you think you have Neurofibromatosis?"

HUH?  Was I seriously being asked this?

I bite my lip and gulp down a lump in my throat.

"Well....."

I open my paper napkin shirt and showed them WHY I think I have Neurofibromatosis.

Yeah...So I flashed these doctors.  What was I supposed to do? :)  (Krazy Kristi winks)

The drs asked if they could exam my back as well.......I tell them, 

"Well it's not nearly as attractive as my front, but go ahead!"  :)

I gave a brief family history ---"Mom, brother....."

One doctor told me that NF was REALLY rare, and it was nice to meet me....

I explained to HIM, that Neurofibromatosis was THE MOST COMMON GENETIC disorder know to humans....and that it was NOT so rare.  Impressed -The Dr again shook my hand.  I thanked him for his willingness to learn....then everyone scooted out.

Ok...?  I was alone again for a few minutes, when my regular DR came in.....

I left the doctors office feeling....I don't know....Weird.   Did I teach those drs anything?  Would any of them think of NF differently?  Could I have done MORE?

Anyways...I put myself out there--I guess THAT'S what matters.

THRIVE ON!

Urologist. AGAIN!

This has nothing to do with Neurofibromatosis.  Just a fair warning.  But it DOES have to do with our fight for proper medical care.  Sometimes, I wonder with some of the medical care our family has gotten, if the doctors are just tired of hearing "Hopkins"...That is not to say that we haven't received some great care, but there are times, when I just wish I had gone to college to be a doctor.  I would definitely treat people with more care and respect than I have gotten.

My 11 yr old daughter is being seen at the Children's Hospital Urology clinic....AGAIN.  This poor girl has battled UTI's since she was 4 yrs old.  Quite exhausting.  For HER and for ME.  The specialists can't seem to figure out why the infections keep happening, leaving all of us frustrated.  At one point my daughter begged me...."Isn't there some kind of surgery, to fix me?"

My heart breaks for her.  She knows she is different....She knows the doctors can't figure out why, and she is as desperate as I am, to find a "cure".

Riley has taken countless bottles of antibiotics, and has taken part it NUMEROUS urological tests. None of which have pinpointed the cause of the UTI's.

My daughter is now on "prophylactic antibiotics" and has been for the last few yrs.  But we still have issues.  We seem to have exhausted treatment, leaving the doctors and our family wondering what's next.

We have had to fight for every test, though.  I feel like I have become a professional when it comes to going into the doctors office, and pushing them to give us full care.  I get so sick and tired of hearing the "Oh it's nothing." or "Let's just give this a few months."  I WANT TREATMENT NOW!

I am the one who asks, "What's next?"  While the doctors are ready to put Riley's chart in a box and "let her grow out of it".

It takes effort to get what you want and need...Sometimes, it takes going to a different specialist...One that WILL go the extra mile, to help you figure out the answers.  I've been learning this...And RE-Learning this....I AM THE ONE IN CHARGE---NOT THE DOCTOR!  The doc just gets to be the one who follows through with the proper referrals and/or treatments.

It's definitely been a hard lesson for me.  I am the type of person who HATES confrontation....One who never questions anything!  So, when it comes to standing up to a person who has 15+ yrs of College, and degrees on the wall....WHO AM I?

I am a PERSON!  I MATTER!  MY CHILDREN MATTER!


Thrive On!

Getting Doctors to listen

Turn-it-Around Tuesday

If you ask someone to marry you and they looked away and told you that they needed to think about it. To give them a week and they will send you a letter, with their response...How would you feel?

A doctor/patient relationship is a marriage of sorts. You put yourself out there in the most vulnerable of ways. An intimate trust is extended, every time we step foot in the doctors office.

YOU are the Doctors managers, in a sense. You have to express how much time you need from them. I walked into my Neurologist, ready to put my brave face....The here comes "THRIVING KRISTI"....able to leap TALL buildings in a single bound! Attitude came out. I was out to prove something, and that was my first mistake.

Call it martyrism, bravery or just being someone who has dealt with pain, her entire life. I wanted my doctor to see....that despite all of my issues, I was okay. I didn't communicate fully, the level of my pain, so how was she to know?

Several ignored phone calls later, however I was at the end of my rope. The "urgent" tests were taking a month to order, my pills were not being re-prescribed, and I was left feeling really dejected.

I wanted to rewind time, and go back to the office visit I had. I would tell my Dr. about my constant and debilitating headaches. My dizziness. Lethargy. I would cry and beg for her to help me. I would show the true pain I am in, on a daily basis.

My frustrations turned to fear and anger, when the MA told me, that I would have to wait 1-3 weeks, for a letter in the mail, instructing me what to do next. "THIS ISN'T GOOD ENOUGH"...I told her. Her dismissive response was to have me go to the ER, if I thought I was that bad off.

Uncaring, under trained, overworked medical assistance, I get it. There are days when I have so much on my plate, that I don't think I can handle anything else. But I still treat people like people. I wonder if in all training doctors or MA's go through, they lose a piece of their heart.

To that MA, I was just a number on a chart. A piece of paper, among a stack of call backs. It's very sad, the way some doctors offices run their business. THEY are there for US, not the other way around.

When my hubby heard how upset I was, after my talk with the MA. He called the Drs office and left a message, explaining how long we have waited for the tests, results and calls backs.....and talked about going to the media with our story, if we didn't get a response.

---We got a personal call back from the Dr herself, within 3 hours. How's THAT for service?

This is MY health we are talking about. This isn't some game of cat and mouse. I was tired of being pushed aside. I am determined to be heard. I'm sick of Drs who tell me, that my NF is not that bad....or that NF doesn't cause pain.

The health care system scares me to death (I hope not literally) and I pray for changes. I pray for these people in the medical field to realize that we are all the same. We need to take care of each other.

Wouldn't be nice, if we could all have a "McSteamy", or "McDreamy"...or heck, even a team of Drs...like the ones on HOUSE, who spend all their time trying to diagnose and figure out what's going on.

I know there are caring Drs out there...I've met a few of them.....and I know I can't realistically have my own team of doctors....but it would be nice, if courtesy, respect and acknowledgement were commonplace at the doctors office.