Confused

Today has left me feeling lost and bewildered. There's nothing more frustrating then spending two hours of your time, going back and forth with a doctor, only to have them leave you with more questions then when you went in there.

I, in fact have Hydrocephalus. But the doctor can't guarantee a shunt would improve the symptoms I have been experiencing (debilitating, daily headaches) She feels that I have ..."adjusted and compenstated" for my hydrocephalus. (which if compensating means having headaches, that would bring the average person to the ER, I think that is HORRIBLE HORRIBLE news)

Also, my Cisternogram came out "abnormal". This was the testing I had done last week, in which a nuclear isotope was injected into the lumbar space in my back (it's basically a spinal tap)

I was monitored over several days.....the drs were checking to see if the isotope was being absorbed or staying trapped in the brains ventricles. And Taaa daaa, it in fact DID stick around in my ventricles longer then it should have.

Scrambling for answers, and wondering about what in the heck is going on.....we phone the Neurologist and was told by her to be seen by the Neurosurgeon, to be evaluated for a shunt. In the meantime, the headaches did not let up. I have been taking the meds and doing everything I can possibly do.

When you are sick and you need help, you are supposed to rely on your doctor--someone who is knowledgeable, and who really cares about you.

I'm not sure where to go from here. But I know that my head (hydrocephalus and all) will remain high. I will not give up. I will fight until someone hears me.

After a Neurological exam, at the Neurosurgeons-- I found I am losing hearing in my left ear. I will follow up with this, and get a good hearing test. I also have a Visual Field Test scheduled for Monday Oct 5th. The Neurosurgeon told me, that if the visual field test shows pressure and changes in vision , a shunt may be the answer (that just left me with more questions) But I guess if I got a shunt due to vision changes, it could restore and improve any losses....but I'd still have the headaches.

Spin spin spin

We'll update as we can.

God Bless and thanks for the support!

XXXX

Doctor and Health Care Facts

Wacky Wednesday

With all this talk about our frustration with the health care system, I thought it would be fun to post some funny stuff about doctors and our lovely health care system! Hope you all have a GREAT Wednesday!

**Did you know, that patients who are treated with respect and dignity, are more likely to follow medical advice? (real shocker...eh?) It's true! Patients who have had a bad experience with their doc, are less likely to fill prescriptions, or follow the medical advice. Thus leaving them, sick AND frustrated.

**SEVEN THINGS YOU SHOULD EXPECT FROM YOUR DOCTOR.......If you don't get this, it's time to find a new doctor.

Confidence

Empathy

Humane

Personal

Forthright

Respectful

Thorough

**(I'm not sure about this one...but it has proven true for me) Surgeons, are taller and usually better looking than other doctors. There was a study done by the University of Barcelona that showed more "average looking" male doctors becoming physicians, and taller, better looking male doctors becoming surgeons. (Just watch the medical TV shows, they pin it right, most of the time) LOL

**A Nationwide survey showed that Psychiatrists, are the LEAST religious, of the physicians. Despite this, these doctors usually ask the most questions, pertaining to religious beliefs, to better understand their patients.

** More than 5% of all US doctors (those who admitted it anyway) Smoke.

**70% of the Medical doctors writing prescriptions for Medicare patients, flunked the exam, on how to do it safely and properly. wow www.truehealthfacts.com

**52% of licensed medical physicians in America take psychotropic drugs every week. Harvard medical school

** The US is rated #1 in the world for degenerative diseases and #20 in life expectancy.

** 300,000 patients Americans are killed in hospitals each year, as a result of medical negligence----And get this--5600 deaths per year for the Vietnam war! USA Today Ralph Nadar

**Heart disease, cancer and stroke are the 3 top killers in our country. The 4th being misuse of prescribed drugs. (USA TODAY)

Wacky facts, huh?

XXX

Kristi

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.

Support Groups Rock!

Motivational Monday

Whether it's a mental condition or a physical condition, finding a group where you feel comfortable and safe is very important. When you find someone who shares the same condition as you, a bond begins to form.

I know for years, I felt like mine was the only family in the world affected by Neurofibromatosis. I almost felt like I had to hide the condition, because I knew if I didn't, I wouldn't be accepted.

Now that I have "come out of the closet" with my NF, I have opened myself up to a whole new world. I have met hundreds and hundreds of other families, who are struggling with the same issues.

I think groups like Facebook, MySpace, NiNG etc, are fabulous for connecting lost souls. People are desperate for that one thing that will link them to another person.

So, if you haven't already, join a group...there are thousands of groups that are already started. Or, you could start your own. I have created THIS GROUP on facebook, and also the NING GROUP - When you make connections with others dealing with the same issues, you feel less alone, or isolated. When a mental or physical condition is diagnosed, it can bring with it, feelings of depression, anger, fear etc...and having a group of people who understand, can make dealing with it, a little easier.

Not only does a support group help YOU deal with YOUR situation, in time, YOUR situation can help someone else. If you asked me 3 yrs ago, where I would be and what I would be doing with my life....It for sure would not include THRIVING with NEUROFIBROMATOSIS! I've come a long way, in accepting my condition. I'm so glad that Thriving with NF has taken off, and touched so many people!

Perhaps you are just finding out about NF, or learning about a new diagnoses in your child....(or yourself) I know, first hand the flood of emotions that come with that. You actually are dealing with a huge trauma. A "loss" of sorts. It's a loss of everything that you wish could be. The death of a dream. A support group can help you reel it back in, and help you hold on to those dreams.

How do you manage this diagnoses? How do you cope? What will my future be like? Well....What I have come to learn, is that I am NOT my diagnoses. My diagnoses, is NOT ME. It will not control me, or shape my future. But, I would not have believed this, without the support of those around me.

It may seem at surface level...that I am all about Neurofibromatosis, with T-shirt sales (fund raising for www.ctf.org), websites and blogs...but that would be wrong. What I am about is helping others see through their diagnoses, to something more....something bigger. Supporting and helping people not just LIVE.....but THRIVE with Neurofibromatosis.

God Bless

Freaky Friday

Are you ready?

Months of waiting....Years of pain. The tests were ordered and I was really excited to to finally have the answers to so many questions. But now that the tests are over...I'm really scared

The first key to accepting your test results, is to understand them. I have gotten many phone calls with results that have confused and upset me.

It's very important to get a clear picture of what your results are telling you.

I remember, getting my kidney results. The CTScan showed calcification, but also indicated tumors in my lungs. The nurse who called me, I'm sure did not expect me to keep her on the phone so long....but I did....I asked questions.....I was tired of feeling like crap. Sent for more tests, that came out okay, but boy was I put through an emotional roller coaster.

Doctors sometimes forget to speak English when talking to their patients, their "tech talk", confuses and scared people. But this is about YOU. Slow your Dr. down....ask him/her to slow down.

With my Neurologist....She quickly spatted out "lipoma, hydrocephalus and ventricular shunt".....Whoaaaaaaaaaaaaaaaaaaaa. SLOW down~~~

I always bring a notebook with me to every doctors appointment. Whether it be my own, or one of my kids. I write down everything! I am learning to ask questions about everything!

This is all about you...start understanding what's going on with you!

I know this is a bit scattered....but it's my Birthday...and I didn't really feel like getting too deep in topics today.

With these test results of my own, I plan on knowing everything, before making any decisions. I am scared....but I am educating that fear.

Have a great weekend!