Tuesday, May 18, 2010

MY PERSONAL BATTLE...WITH MAD ABOUT MENINGIOMAS!!!

This particular blog is very personal to me...as I am fighting mad! Last week a high profiled neurosurgeon...made the blanket statement...that, "After you have a craniotomy for a Meningioma you are cured."

That is just utter nonsense. As many of you know...I had a benign Meningioma removed on September 8TH, 2008. I am almost 2 years out...but I have to tell you...that my recovery has been anything but *BENIGN*!

I still battle with constant head pain...so severe at times...that all I want to do is scream...and nausea so bad...that I just feel miserable.

I hardly call that cured. You have to also know that people in my support group...Meningioma Mommas are not taking this sitting down. Many have written this individual...and one was even fortunate to get her letter published. I was so proud of her. She worded it in such a way...that you can't deny...that there are still problems/deficits after such a procedure.

The facts I want to bring out here are...even though many of these Meningiomas are benign...as I said before...I hate that word...there are people who suffer great hardship. Some have lost their jobs...marriages have been destroyed because the spouse can't handle what they have gone through. How about the person...going through it? You actually think...it's a picnic for them?

I also know of people who have had Meningiomas removed or not entirely..because of the danger of their location. They live from one MRI to the next..now do you call that cured?

I also know of people who can't drive...because they suffer from seizures...yeah...they had a benign Meningioma!

More awareness has to be made to this most primary brain tumor...although sadly...the least acknowledged.

After a statement like that was made in the medical community..who is going to take these seriously? I know who does...the thousands of people in my support group...and yes...even some of their caregivers.

My PCP put it so eloquently...when he said.. "Meningiomas can be serious..but they are always SERIOUS...to the person who has one." He really gets it!

I also was on the other side of the spectrum of being told that mine could be watched! It wasn't until after my neurosurgeon...told me it was heading right toward my motor skills...that I realized what a great injustice to me, had taken place.

I had no alternative but to have it removed. The pain was getting worse...and I certainly didn't want more damage to occur.

I have met some wonderful people from all over the country and even the world...in my support group and through Facebook.

We are all in agreement...that Meningiomas need to have more funding...and stop being treated as insignificant...because this just makes us angry!

This being National Brain Tumor Awareness Month...the 2ND one...as I have mentioned in a previous blog...this has even become a greater battle for all of us to fight...and we intend to win!

So you ask me if I am Mad About Meningiomas? My response to you is, you better believe I am!


Wednesday, May 5, 2010

A MONTH OF AWARENESS & CELEBRATION!

As some of you know...this being May...is National Brain Tumor Awareness Month...only the 2ND one though...which is sad...because so many are touched by this awful diagnosis.

It's also National Arthritis Awareness Month. The reason I am addressing both of these...is the fact that I am a brain tumor survivor...and have also had Rheumatoid Arthritis for 19 years now.
The fact that I am still holding down a full time job is enough of a celebration for me...as statistics show that after 10 years..you can no longer work or are disabled.

Arthritis is the #1 cause of disability in the United States.

The following are facts from the magazine "Arthritis Today." 46 million adults and approximately 300,000 children in America are living with doctor-diagnosed arthritis..which probably means, many more are living with this disease, and have not been diagnosed yet.

There are over 100 kinds of arthritis. I having one of the top 5...that being Rheumatoid Arthritis.

I have managed pretty well for the most part. My first 10 years of living with this disease were kinda my private *HELL*...in that there were was nothing out there in the way of drugs that I could tolerate very well.

I was on a cancer drug... for 4 1/2 years...but the things that happened to me were just so awful...sore gums, thinning hair, chronic sinus infections, being tired and cold all of the time, nausea...until I discovered Ginger Root pills. I would also get really sore the day I took the medication.

I am not pain free by any stretch of the imagination...and I have to use my head about how much activity I participate in.

I do full range motion twice a day..and try to do moderate exercises at least 6 times a week.
I also can't be on my feet for long stretches at a time...as I start to have difficulty walking and become very stiff and sore.

So you see...for some this can be very difficult to live with. After all these years...I have finally found a rheumatologist...who I really like and trust.

More has to be done. Research is vital. Many more drugs are now available and people are being treated much more aggressively.

I have been on a drug for the last 9 years...that has changed my life in so many ways. I'm not going to be running any marathons soon..but I can function for the most part. I have a life. I just have to learn to pace myself at work and my activities at home.

The 2ND part of this blog is about my living as a Meningioma Brain Tumor Survivor! This one has become a very important aspect of my life...because I have come to the realization...that even though it was a benign tumor...there is absolutely nothing benign about recovery and what so many have to go through.

I have become a advocate for Meningioma Mommas...the online support group that I joined after I went through my brain surgery. I believe in their mission and I can relate to so many.

I have made many friends all over the country and even the world. There are just too many of us who are getting these tumors. There are the most primary...but sadly the least acknowledged...because of the fact that 90% of them are usually benign.

I want us to stop using that word *BENIGN*...quite frankly...it makes me angry!

When you have brain surgery...you go through so much. Your life is forever changed. There are issues with memory...not being able to keep your train of thought...if interrupted. It's actually pretty frustrating.

I have to stay focused..or I just get off the track.

I also having had a frontal lobe M...also fall into the category of the emotional. We can cry at the drop of a hat. I find myself watching something on TV..that really touches me and I just burst into tears. This no longer bothers me..as I have been assured that this is normal and actually is a coping mechanism.

There is something very important I want to share with you. There is a petition out to have The US Postal Service have a stamp for brain tumor awareness. I ask that if you are reading this...that you would would click on the link below.

http://www.braintumorcommunity.org/AwarenessStampPetition

I really appreciate this and I know that many who are brain tumor survivors..or who still have brain tumors will as well.

Thanks for allowing me to share these 2 very important causes with you.

I know beyond a shadow of a doubt..if it were not for this brain tumor...I would not be writing these thoughts.

I have been told that you become creative after having come through such an ordeal..and I just can't argue with that logic.

Now that's a real cause for celebration!