Assert Yourself!

I don't consider myself a very assertive person.  For most of my life, I have let people walk all over me.  Family members, friends, co-workers, doctors... heck, even my husband.  

It's HARD to stand up for yourself....Especially when you aren't confident with what you have to say.

I remember one doctor visit a few years ago, when I was talking about my hydrocephalus and possible shunt surgery.  I'll put it bluntly...The Dr. was a jerk.  She had wall around her a mile high and didn't seem to care one bit about my pain and suffering.

I was dismissed without any answers.  No solutions for my headaches, and surgery was simply "Too risky and not an option."  A quick "See you in a year"....and I walked out feeling WORSE than when I walked in.

So how do you get doctors to listen...REALLY listen to you?  Yes... there are rules to this, and if you follow them, I promise, you will have a great doctors visit!

First....Be specific. Instead of just complaining about your pain, describe it!  "The pain in my fingertips has been going on since 2009, and it REALLY hurts when...."  or "My headaches have been worse since 2008, and no over the counter medications seem to help."  The MORE specific you are, the better the outcome will be.

Doctors have a specific time allotted for each patient scheduled...But that does NOT mean that your time has to be cut short.  

Do NOT accept ..."See ya in a year." answers. 

Next...Keep it short. Bringing in 10 pages of your medical records is not helpful. No doctor can’t get through that in 10 minutes.  Going to the doctor, with a list of symptoms would be like taking a child to a candy store and telling them to pick their favorite candy, in 3 seconds....IMPOSSIBLE!

Try scheduling a few appointments, to talk about specific issues.  For example; I scheduled 3 appointments for myself in one month, with the same doctor.  1-to talk about tumor-related leg pain, 2- to go over the results from my thyroid ultrasound and 3- to refill important medication, and talk about side affects.

It can be overwhelming to have that many doctor visits, but trust me, you'll get a more positive and thorough result!

Know your family history, especially when it comes to genetic disorders.   Most doctors want to know  if what you are experiencing, can be tracked back to another family member.  A simple "family tree" of health related issues, can be a HUGE time saver, and I suggest you map one out, BEFORE your appointment.

Ask for what you want. “If you’re assertive and say, ‘I want to be checked for this, this, and this,’ without sounding too hypochondria-ish, doctors have an obligation to do so.  I went into the doctors stating the fact that my headaches aren't cured by simply Tylenol.  I asked for specific medication that was recommended by another doctor, and I got a prescription for it.  Know yourself...Know your needs...and present those needs confidently!  Which brings me to.....

  Don’t apologize. Think of your appointment as a business transaction!  I'm serious.  Doctors are paid to listen to everything you say.   None of this..."I'm sorry to bother you doctor" or "Do you think I should...."  That kind of talk will get you nowhere!

Understand what comes next.   Ask four questions after every appointment: What do you think of my  symptoms?  Are you ordering any lab tests? Why? And when should I expect to hear from you about the results?  Ask for any referrals or any other important information that you will need.

And last but not least...

Switch doctors (if you must). Don’t wait. Get someone new who really hears you.  It took me 33 yrs before a doctor recognized my Neurofibromatosis.  That's FAR FAR too long!  If your needs are not being met, find a doctor that will take the time to get to know you.  

I know for some, this isn't an easy process....But nothing worth having is ever "easy".  YOU are in charge of you...and no one will do it for you....

Present your new THRIVING attitude to the world, and you'll be amazed at what you get back!

Thrive On

Glomus Tumors! Ouch!

The pain is unmistakable!  People who suffer with Neurofibromatosis, who also complain of pain in their fingertips,  seek answers to questions that often go ignored.  "Why am I having this pain?"  "Why does it hurt so much?"  

The first doctor to recognize the pain that I could only explain as "nails through my fingers", was Dr. Stewart at the National Institutes of Health in Maryland.

During my trip to NIH 2 years ago, while participating in a study for Neurofibromatosis, a simple question, would change my life forever.  "Do you happen to have pain in your fingers or toes?"

A light went on that day.....

First, what the heck are Glomus Tumors?

Common with Neurofibromatosis, Glomus Tumors are benign, slow growing tumors, that often grown in the fingers and toes, although they can grow anywhere in the body.  These tumors cause significant pain and are classified into 3 groups: solitary lesions, multiple painful lesions, and multiple painless lesions.

Treatment of glomus tumors is surgery. The surgery involves medication to numb the hand, and removal of the nail, to expose the nail bed.  Full removal can be difficult and recurrence rates reportedly are as high as 20%! 

The pain from the surgery, was pretty bad....and recovery took a long time, but the outcome was worth it.  A total of 5 tumors were removed from one hand, with more on the other hand, to be explored at a later date.

When I see the hundreds of stories, from people who have Neurofibromatosis and finger pain, I can relate to the pain and frustration they feel.  I had gone into many doctors complaining of my pain, only to have no answers...no hope of ever getting better.

But there IS hope.  If you are having trouble getting your doctors to understand your pain, the first step is to go into the doctors office, armed with accurate information.

Some doctors, in my experience, have barely heard of Neurofibromatosis, let alone glomus tumors and there is nothing wrong with helping to educate the doctors you see.

EDUCATION/ATTITUDE/SHARE/YIELD

Thriving with NF is "EASY", when you go after the care you deserve, 

while respectfully educating those who take care of you.

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.

Importance of Participating in Research

When I was first diagnosed with Neurofibromatosis, the last thing on my mind was to tell the world about it. I, in fact did the opposite. I did every thing I could to hide from the world, and hide, as long as possible, my NF.

But you can only run for so long, before reality and the truth catches up with you...and it did for me, in a big way.

It took a lot for me to accept the reality of having to deal with having this life altering disorder. I didn't like it...I didn't want it...And I didn't think it was fair! But after I chose to break down the walls of denial, and build up some power to fight back, I began to accept it, and even embrace it.

When my children began showing signs of issues, I began devouring as much information as possible about Neurofibromatosis. I impressed and sometimes scared my husband with how much information I was taking in.

I started support groups and websites, I even enlisted in on-line surveys and signed up for NF studies that took me across the country. I wanted to stand up and shout to the world that I had NF, and then teach them about it!

Doing all of this has help me grasp my reality, and the reality for my children. I have learned so much and can now be an advocate for them, and possibly for many others, who are struggling to accept their own reality.

NF does not have to be the end. I know that the pain it causes can be extreme and in many forms, but you must fight through it. Finding something other than your own pain to focus on has truly helped me get through this....and one of the best things I have done, so far was to participate in research and since NF is so broad, there are many areas that Drs are very interested in.

Last July, my brother and I took part in a study about NF variability. We were treated like royalty, while we underwent 3 days of MRI's, blood draws, dental consults, photos, imagry and one on one genetic counseling! Try getting all that, with your insurance coverage!

It was amazing, the doctors who were doing the study truly cared about the person in the study, not just the results. I finally found a place that understood everything I was trying to communicate, for so many years. It was like -- I found someone who spoke my language!

Six months after that study, I was invited (yes invited) back to have surgery performed by a well known plastic surgeon. (Tummy tucks not included this time...darn) I stayed 6 nights this time and ended up meeting a woman who I will be life long friends with.

So many good things have come from participating in NF research and reaching out to others. I hope to be a part of future research and do plan on getting my children involved.

Please, reach out, get involved!

www.NIH.gov

for more information, or contact me directly at kristi.hopkins@gmail.com

Ouch Ouch Ouch!

Well surgery is over, and my hand is bandaged up. I am very happy it's done and I know this short term pain, will get me to long term pain free (or so we hope)

The surgery was supposed to be Wednesday, but was postponed, because of technical issues. The Dr. came in and apologized and told me it was all on for Thursday at noon.

Before the surgery, Sonia and I went to visit the pediatric unit here at NIH. I met with one of the ladies that may be taking my kids on, in one of the studies! They really treat their people good here, and I would LOVE for my kids to experience this!

It wasn't long after we got back, that the stretcher to take me to the surgery came for me. I put my fancy gown, and my tights on and climbed aboard my chariot!

While in the holding area....the anaesthesiologist talked to me about the types of meds he could give to me, and we opted for a "digit block". He used a local anaesthetic and injected into my fingers...numbing them...totally. Then ... slowly ...adding a relaxing medicine into my IV.

The operation started with an incision and removal of the nail. Then, the Dr  hunted for the glomus tumors.

I was in 'Twilight' most of the time...talking about Red Lobster...the drifting off to sleep.

The numbing lasted all night, the pain started this morning.

I am supposed to be getting pics (we'll see)


My hand felt nothing as the procedure took place...And was bandaged up and I was wheeled back to my room.  The pain meds took care of most of the pain...and I could already feel a difference in how my hands felt.   AMAZING

Whacky Wednesday

My daughter looked at me the other day, after I mentioned being a little scared for my trip to NIH. "Aren't you a little old to be scared of doctors?" she asked. I rolled my eyes at her and drew her near to me. "You can be too old for a lot of things, but you are never too old to be afraid." (quoting one of our favorite holiday movies 'Home Alone')

My inquisitive little 9 yr old daughter began asking questions about why I was going to a hospital "ALL the way on the other side of the planet"...

She knows about Neurofibromatosis, at least she knows her mommy and 2 sisters and brother have it...But I thought I would take this opportunity to teach her a little about the disorder. (I mean hey, that's what we are all trying to do here, right? And you never know, she may just grow up and be the person to discover a real cure for NF)

So I went to the handy dandy Netbook, and typed in WWW.CTF.ORG ( I love this site ) and read to her the definition of Neurofibromatosis. I was amazed at her understanding and praised her for wanting to know more about this lifelong disorder.

As I was talking to her about the tumors that mommy has (glomus tumors) I told her that they cause mommy a lot of pain. "The drs here don't know much about NF, honey so I'm going to a place that knows ALL about it."

"I thought Drs were supposed to know everything though...why don't the ones here know how to help you...?" LOL My reply to that question could go on forever....but, I simply stated that there are soooo many illnesses, and diseases out there and not enough doctors. Which is true.

"How do we get more doctors to know about NF Mommy?" (Dang this girl is smart!) I hugged her and told her, "We just keep fighting, keep talking, and we don't hide from what scares us." She just looked at me and said something that melted my heart...."You're the bravest mommy I know, I will miss you when you are gone."

Another person educated about Neurofibromatosis.....will you take the time today to teach someone about it?