Wednesday, November 10, 2010

THE LIGHT AT THE END OF MY CARPAL TUNNEL...


This blog has been a long time coming.  You see...around about February of this year...I started noticing some numbness and tingling in my left hand... my first thought was, that I had just slept on it.  It continued to get worse...actually starting in my right hand as well.

In April...I had my annual physical with my PCP...and he did a little test.  He had me put my 2 hands together in an upside down position for approximately 60 seconds.  Guess what?  The numbness and tingling instantly returned.  He felt...that I had the start of carpal tunnel syndrome.
 
Like I had mentioned in a previous blog...why must everything be a syndrome?  Sounds so ominous.

Just so happened that very afternoon...I had an appointment with my rheumatologist...so he told me to be sure and mention this to him.  I got to my appointment...and he did the exact same test as my PCP did...and lo and behold, the numbness and tingling began just like that.

The next step was to have an EMG...or what they usually refer to them, as a nerve conduction study.  I had one of these back in 1984 on my legs...when I was suspected of having a herniated disc...which actually turned out to be an ovarian cyst...but that is another long and agonizing story.  Anyway...I would have to wait another month for this test.  Remember...I have already been dealing with this since February.

So I had the test...they have you lie down and actually send electrical currents to your hands or wrists...and you feel these shocks.  I hate shocks..as sometimes...mine, even give off sparks.  It must be my magnetic personality...hahaha.

The test was considered normal...because as my neurologist who did the test..said..."It Come And Go."  Yes...you heard that right.  This is the same neurologist I had prior to my brain surgery...so I knew I wouldn't get very far with him. He said not enough to warrant intervention.  I was not giving up!
 
He also said that maybe I would need another EMG from time to time.  Insert...RED FLAG HERE! 
He also said it was because of my rheumatoid arthritis.  Now I have known of people who have had carpal tunnel without the RA...and this was just not sitting right with me.

My next step was to see my rheumatologist to at least try to get some relief..I wanted to have my wrists injected...not really...but my job is a scanner..and that requires a lot of computer work and using of my wrists and hands.

I arrived at my appointment...which btw...was made in a lunch line at our cafe at the hospital.  Honest!  He is just that awesome...he really wanted to help me and this specialist was going to be there to demonstrate on a machine, that would be a guide for them, so they would know exactly where to inject.
 
It was awesome!  This is what was found.  "On ultrasonographic evaluation there was a suggestion of entrapment median neuropathy at the level of the carpal tunnel, more so on the left side.  On the right side I had a bifid median nerve with an accessory median artery next to it."  Really sounds like carpal tunnel to me. Another side note...that extra accessory median artery that I have is usually gone...when you get to be somebody my age.  Well...this is me we are talking about. It's not uncommon...but nevertheless rare.

The next step was to see a specialist...well Brenda just thought she was so smart here...and jumped in and said that I wanted to see my neurosurgeon.  Sometimes..in life there are disappointments...this turned out to be a great BIG one.

He said there was no way it could be carpal tunnel...because it always involves the first 3 digits...not the ring finger or the pinkie...I just so happened to experience this in all five...so I was told to basically see another neurologist and to maybe have another EMG...which btw...they couldn't find that day on the computer. Another RED FLAG!

I immediately called my rheumatologist's office practically in tears...because I just could not believe what was happening.  I'm going to stop right here and say...only *YOU* know what is going on with your body.  Do not stop pushing, begging or whatever you have to do to get a doctor to listen to you.
 
I had to wait another month...but this time I was assured that my wrists would get injected. I saw him and asked him right off, if I could get a second opinion?  He said yes...and he now was so good with that machine...that he was able to inject using the guide.  It was a pretty pleasant experience.  I have had rheumatoid arthritis for over 19 years...so believe me when I tell you...I have been through *HELL* and *BACK* many times.

He gave me the name of a specialist and I went home and called their office and I only had to wait a couple of weeks.  I was really starting to feel, like I was getting somewhere.  Thanks in part to my wonderful rheumatologist..who I trust with all my heart.

I went to my appointment.  They did a finger prick test...where you can't look and they ask you each time how many pokes...one or two.. in each individual finger.

I saw the doctor...was very impressed with his bedside manner and he definitely told me I had something going on.  He wanted to be absolutely sure it was carpal tunnel, so he injected into the carpal tunnel in both wrists..wanted to see me back in 6 weeks, if there was any improvement, then surgery could possibly be an option.
 
I ended up with 90% improvement...so full steam ahead.  The surgeries were scheduled for October 29TH and December 10TH...as they have to be 6 weeks apart.  He also recommended taking it nice and easy...so after the surgery...I was to only work half days for the 1ST 2 weeks and then remain on my restriction for the next 4 weeks.  Also...no pushing, pulling or lifting of greater than 1 to 2 lbs.

I had my first surgery on Friday afternoon October 29TH.  Being that I was not going to be put out entirely...it was decided that no anti-nausea drug would be put in my IV.  Well...let me tell you folks...I am a veteran when it comes to surgeries...this being my 11TH & 12TH coming up...and I always get sick.  You're never going to believe this...after I came out of recovery...I was sicker than a dog.  I was also very angry because...I was not taken seriously about the anti-nausea drug.
 
They had to try 4 different times...before I finally started to feel somewhat human...where I was sent home with a Scopolamine patch behind my ear.  They usually give these for motion sickness on cruises, etc. I was told the next time to be sure and mention my problems with nausea.  You think?

Oh...the surgery went well...they had to go in deep...but he was confident, this would help.  I went home icing and elevating my hand, for the first couple of days.  I started exercises the very next day to keep from getting stiff.  I was send home with strong pain meds and anti-nausea...but have used neither.  I am a tough cookie...as you will find out...as you get to know me better.

I went back to work that next Monday...to start my half days.  I have taken a nap so far in the afternoon every day.  I am just so exhausted.
 
To top everything off...on the day of my surgery...it was discovered, that I had a flood in my apartment bathroom and that the ceiling was starting to cave in over the shower.  There was an overflow upstairs...something with a stopper...don't understand all that stuff.

So I am camping out at my Mom's...which was really the plan anyway...at least for the 1ST few weeks...but it looks like it may be longer.  She has been taking great care of me.
 
I had my 1ST post-op appointment and met with the OT.  I only had 2 stitches...so it didn't hurt too much...when she pulled them out.  She gave me some more homework.  Massaging the scar 4 times a day for 5 minutes.  Light gripping with Play-doh for 2 minutes 2 times a day.  Contrast baths for my hand, twice a day...this is where you start out with warm water and then go to cool for 30 seconds....5 to 10 minutes twice a day.  You have to be sure and start and end with the warm water.  This prevents swelling.  I also have to continue my tendon gliding exercises every hour to keep everything from getting stiff.
 
Another side note...because of the fact that they were so concerned about me developing an infection...I had to go off my injections for my RA...one week prior to surgery and 2 weeks after.  That's a total of 3 weeks without my injections.  I have started to get pretty stiff...especially my right ankle...where I recently had a flare.  I finally was able to get back on my injections and hopefully things will start to get better.  We do all this again for the December 10TH surgery...which I am planning not to get sick from...because you can bet your bottom dollar...I will ask for that anti-nausea drug to be put into my IV.
 
This sure has been quite the learning experience for me.  I understand, that you have to keep mobile to prevent stiffness and swelling.  I do not have to return to OT...as I can do everything required at home.  I am doing pretty well for the most part...the pain has sure lessened.
   
I never thought that day would come when...the light at the end of my carpal tunnel was finally opened.

Sometimes in life...things don't always work out.  Well this happened in the case of what was to be my surgery on December 10TH.  I went there all prepared to have the procedure...when I suddenly became very sick from the medicine that they put in my IV...which was to prevent nausea...but instead, it backfired big time.  I ended up not having the surgery that day.

My surgeon even came in to visit me and and expressed great concern.  He said several times...that if I didn't feel better later...that I should consider going to the ER or a walk in clinic.

I just went home and tried to rest...but it was very difficult...because I felt so rotten.  I knew at this point that I needed to get this rescheduled as soon as possible. 

I was able to get another date for December 30TH...nothing like cutting it thin.  I am to go in at 1:30 p.m. on Thursday and if everything goes well...I should be home by dinnertime.

Let's hope my light at the end of my right carpal tunnel finally becomes opened and closed.  This has been quite the experience.

Just a note regarding my surgeon.  He was so concerned that the next week...his office called to see how I was doing.  Now...that was *NICE*  Good to know...that you have a great surgeon in your corner.

Saturday, October 16, 2010

THE GREAT FLARE OF 2010!!!


As some of you know...that read this blog, that I have struggled with Rheumatoid Arthritis for the past 19 years...but nothing could have ever prepared me for the terrible recent flare that I experienced.
I realize...that this disease is very unpredictable...not knowing from one day to the next what to expect.  That's why I get up early each morning...to deal with the unexpected.
 
My right ankle had been bothering me for several weeks...but I just figured...it would get better in time just like anything else has, that had been hurting, etc.

I went to work...but when I was walking on it, it hurt much more than usual.  I finally took a little break to inspect it...and low and behold it was red and swollen.
 
I knew I had to attack this head on, so I contacted my nurse and left a message.  I went home from work...to wait for her call.
 
She called back later and said she could work me in...but it would be waiting.  I didn't care.  I was just happy...that I would be seen that day.

I got there and checked in...maybe 5 minutes later...I was called back.  Wow! that was quick.  She saw me try to get up and asked if I wanted a wheelchair?  I didn't have to think about that twice.  It did remind me though...of when I had my brain surgery and was recovering...and that I used one while we were shopping once...as my head just could not tolerate the hard floor.
 
She said she would wheel me...if I would take my chart...I said okay.  Now...I work in the medical records department at the clinic where...I am employed...so I see these everyday.  I was shocked at how big it had become.  Apparently, I see the doctor quite a bit.  hahaha!

Anyway I managed to step on the scale...then we went into the examining room.  Mom was with me too...as they say, two heads are better than one.  I was in so much pain...that I was afraid I would forget something.

She took my blood pressure...which was a little high...but not surprising with what was going on.

The doctor came in...had me remove my socks...as he wanted to examine both ankles.  The funny thing about this whole saga is...that before my brain surgery and sometime after...I was wearing a left ankle wrap...so this whole thing really threw me for a loop.

Guess what?  My diagnosis was correct.  It was just a real bad flare.  He did an x- ray of my ankle...just to be sure...there was no sprain...break, etc.  There were 3 views and each just showed arthritis.  He said not bad...as he had seen worse.  I think maybe he was trying to make me feel better.

Anyway...he prescribed pain pills...3 times a day..to help the swelling go down.  To go home and ice it...and off of work the next day...which was Friday...and I would have the weekend to re-cup.
We left the office...with my nurse wheeling me to our car.  It hurt that bad.  I even went back to my cane...just to get around the apartment.
 
Well Monday rolled around and guess what?  Arthur had other ideas...that's what I refer to my RA as...gets people every time. I put a call into my doctor's office..and the nurse called back...and he suggested trying an air cast to help immobilize it.

It made sense to me...so I got fitted for the air cast and was able to go back to work the next day.  I would like to thank my boss...who btw reads this blog, for filing my charts...so I could have a chance to recover.
 
I'm still am wearing the air cast...but the swelling has gone down considerably. I am no longer taking the pain pills...my doctor said to save those for the next flare.  hahaha!
Anyway in all of my 19 years of having this disease...Arthur really did a number on me with this great flare.

I have refused to let the RA control me...and it NEVER has or NEVER will!

Well...the great flare of 2010...ended up actually being tendonitis in my right medial foot.  My rheumatologist...who I love dearly and is leaving to take another position in another state...discovered it on examining it. 

He sent me to a podiatrist...who concurred with the diagnosis and prescribed an ankle brace to wear and to invest in some good supportive shoes.  Now this did not come without expense.  If it helps...then it will be worth it in the long run.

I am also on light duty for 2 months at work.  I am also not to stand or walk more than 15 minutes at a time...so my shopping is done by wheelchair.

For me personally...this is very frustrating...but like everything else...I am a fighter and this will not beat me...EVER!

Tuesday, August 24, 2010

REFLECTIONS OF A SECOND CHANCE CRANIVERSARY

On September 8TH..I will be celebrating my 2ND chance craniversary. It's hard to believe that almost 2 years have flown by. So much has happened in that span of time.

What I want to do with this blog entry, is to share some of the highlights of the past 2 years. Prior to being diagnosed with my brain tumor...I joined a group called "Living The Truth." It started with a vision from Dr. Keith Ablow...who is a renowned psychiatrist. His philosophy is that everyone has a story. Everything you need to know about yourself is already deep inside of you. That is what he calls our hidden or buried treasure. I also wear a key...that was originally a key chain...that I put on a chain and wear it around my neck. It is quite the conversation piece.
Besides that...it's beautiful.

Along my journey..I have met many wonderful people on this site. We also have a place where we can have a blog...that's where Brenda's Brainstorm was born...An Inspiration Out Of The Blue.

I also met one person in particular on this site..who has become such a great friend to me. He has been one of my greatest supporters...not only in my writings, but also keeps me laughing and encourages me every step of the way.

I am talking about Rich Woods. He was there for me...before, during and after my brain surgery. I always tell him...thanks for always being there.

We both like to read...and he recommended some awesome books...while I was recovering.

After a while...I realized, I wasn't handling all this recovery so well. I joined another wonderful support group....Meningioma Mommas. How great to actually join a group with the same name as my brain tumor? I want to thank Liz Holzemer for having the courage to start such a great place to go...for people who just *GET IT.*

Rich was very supportive of me joining this group. It has been a real blessing and a great help to me. I have made some wonderful friends there as well. It was there...that I was encouraged to move my blogs to here...so that more people could read them.

Rich wanted very much to start an Internet show. As I am writing this..."UnLearn The Show"...has now been on the Internet...every Tuesday night for well over a year now. Their viewership has been phenomenal!

The neat thing about this is... that Rich invited me to be a part of something that was important to him. I was really glad...that he included me in this.

He has a co-host...Tony, who has been a great addition...which has now become "UnLearn The Show with Rich & Tony." It's a socio/political satire. They make fun of everybody...but he is especially hard on the self-help industry.

Rich's wife Jane, is the producer...and she does a fantastic job each week..keeping everything organized and running smoothly. I keep reminding Rich...that without her...there would be no show. hahaha! She is also beautiful and very talented.

You can also chat along while watching the show. How cool is that? It airs every Tuesday at 7:00 p.m.  EST.  http://www.unlearn.tv./

Be prepared to laugh...it has truly become my weekly therapy. As they say..."Laughter Is The Best Medicine."

The reason I am plugging Rich's show...is because for Christmas...Meningioma Mommas sold cook books. Not only did they purchase one...but they went one step further...one week they featured a recipe on their show. Thanks, for all the exposure you have given Meningioma Mommas. I have lost count how many times, we have been plugged.


Another thing Rich asked me to do was to write a tandem blog with him. I was truly blown away.
It was about our personal feelings regarding the self-help industry or as he refers to it, the self-hurt industry. His was called Self-Help, Truth & Consequences and mine was Helping or Hurting. It was a lot of fun...to be asked to join him in this project.

I am going to do another plug. Rich has written a book.."UnLearn! Because Life Can Make You Stupid." It is full of common sense period. He has also just finished writing another book...which will be published very soon...of this I am sure. He is a fantastic writer!

It has really been a pleasure sharing this with you. Rich...our friendship has been an investment that has come back to me...in dividends so many times. Thanks for always being there and for being my friend!

Monday, July 26, 2010

HOT TOPIC!!!

This blog may be very sensitive to some...but I am telling you from the very beginning, that what you are about to read, are things that have happened to *ME* personally, during my many years of service in the "CHURCH."

I write this...because I hope with all my heart, that no one has to ever go through what I did. Some of what you are about to hear, I hope may be an eye opener to some.

I am also going to say from the get go here...that I have had some wonderful dialogues with many...both those who believe in God and those who don't, in regards to this. I just want to thank those of you who reached out to me from the Christian community before, during and after my brain surgery.

I grew up in a Christian home. My Mom was the one who took us girls to church and she was pretty much the spiritual leader in our home. My Mom has a quiet faith...she lives by example...as I have mentioned before in my blog on her.

I went to Sunday school, church, Vacation Bible School, during summer breaks. I sang in the choir, sang solos, was involved in a puppet ministry for a few years, which I really enjoyed. I was actually pretty good at that too.

Now...you would think, that after having served all those years in the *CHURCH* that when trials came along, there would be people that would be there for you. At least, that is what I thought.

My experience was pretty much...that when I got sick, I was basically told, that I didn't possess enough faith...and that's why I wasn't being healed. That is the worst thing that you can ever tell a person. How dare...they judge me and tell me that what I am going through is a result of less faith than what they have.

If the the tables were turned, believe me, these same people that told me this...would look at this a lot differently. I am also here to tell you...that I judge no one...never have, never will.

This has been bothering me for years and I just need to get it out, once and for all and move on.

I got sick and tired of sitting in a pew Sunday after Sunday...and made to feel like my life wasn't in line with God's will....just because I happen to be living with a disease, that I knew, I would have the rest of my life. I was in despair, people here...I really thought my life was over, as I knew it. That was the last thing I needed.

I ended up leaving that church and trying another one. I was not a church hopper by any means...but I just didn't feel like I could stay there any longer.

I got involved once again..but it was very difficult, because I was still in the very early stages of my RA and I could hardly walk. Standing for choir was extremely difficult...but I enjoyed it so much, that I toughed it out. All this time, I kept getting advice from people...who were so clueless about it all.

So I tried to plug along, but it got more difficult all the time. I was so fatigued with the RA and
simply couldn't keep up with everything. Little by little, I dropped my involvement. I finally left that church and tried another one. This time...I decided, that I would just take it nice and slow and just maybe sit back for a change. It was alright for a while...but I never felt very welcome there..so I just decided, that I was just going to quit going once and for all.

My Mom attended that same church and when she asked some one to visit my Dad...when he was in the hospital...no one came.

When my sister died...no one called me from the church...that I had served so long in. That really hurt. I lost my sister and I felt so alone.

When my Dad died...it was pretty much the same thing...so there we were once again all alone.

So when I got my brain tumor...I just told my Mom, that I wanted no one contacted because they didn't care then...and I wasn't expecting much...so why bother. This is when I had my heart to heart with Mom...about how I had been treated in the church and why I don't attend anymore.

Even after all of this...I believe in God...because I realize, that it's the people who did this...are the ones, not truly living up to their Christian values.

This is my whole take on my relationship with God. Christianity is a relationship. Relationships are personal and no one has a right to judge what is in my heart. ONLY God knows my heart and no one else. Don't flaunt it..just live it! Don't make others feel inferior...just because you don't think...they possess enough faith.

They don't have any idea...what my personal life with God is like. I don't know what your lives with or without God are like. I don't have any right to judge and neither do you. You also have to be careful when you are talking about religion...that you don't do it out of hatred or malice. You don't know...what that other person believes and really, that is just none of your business.

I also don't go around telling others how great I am...just because I happen to have God in my life. I don't think you should EVER have to tell someone, that you are a Christian...JUST LIVE IT!

I have lots of people who come to me...for advice because they know, I don't judge them. I have been through so much...that I never want another living soul, to go through what I have. It hurts so much.

I just hope you will read this with an open mind... without any one taking umbrage...with what I have just shared. Like I said...these are things that have happened to me...I can't change them...but I don't have to allow myself to ever go through this again EVER!

I want to close with this...don't ever tell someone just because they have God in their lives...that it is going to be an easy ride. Life is not always wonderful all of the time and yes...even people who have God in their lives get depressed. Don't make them feel ashamed for those feelings. Stand by them and help them get through those rough times.

Wednesday, July 21, 2010

FRIEND OR FOE?

Nobody ever said life would be easy...making friends is no different sometimes.

Recently...I had to make a very hard and difficult decision. I had been involved in a friendship that I thought was going pretty well. We had some rocky times...but that is to be expected. Each time..thinking it would get better.

I tried to be there for this person as much as I could...and in turn thought..I would get the same results. Depends on the day or the situation.. and so I found out the hard way.

I was just about to share something really spectacular that had just happened to me..and the response was.."That maybe so, but I have more important things going on in my life right now." Believe me that hurt, as I was only trying to maybe cheer this individual up..but it took me by surprise..that I decided right then and there....that I was done investing in this friendship. That person really just told me..that what I had to share was of no value and that all their problems is all that I should focus on.

If this person had just said, "That's great...I'd love to hear about that sometime...maybe when things settle down." They just said, what they did and walked away. I was really in shock and angry all at the same time. I actually shed some tears over this...but that's over.

You gotta understand..that I have become a little thin skinned due to the location of my brain tumor..that being the frontal lobe. I don't think it would have hurt me or hit me so hard...but I still felt it was uncalled for.

This person is also what you would call an emotional vampire...which can be very exhausting!

This person is also a real piece of work, as I found out. Since I have severed all ties with this individual, I have really begun to see their true colors. Taking advantage of any situation, etc. I'm not at all belittling what is going on in their life..but we all have problems and we just need to learn..in a friendship there is give and take.

I wanted to give that day..and it was just discarded.

I really write this because...I am here to tell you, that toxic and one-sided friendships never work. For all the friends that I have established...it was no great loss. I also have been assured by some..that it was rude and my choice to move on has been encouraged.

If you happen to be involved in a friendship...such as this, RUN LIKE *HELL* and don't look back!

After all, it's their LOSS!

I really feel kinda sorry for this person..because they will never realize what a great friend, I can truly be. I will give my all to something, if I know it's worth it in the long run.

I think there is a saying, and it goes something like this. "In order to have a friend, you need to be a friend."

I hope this has given you some food for thought. I was really upset about this at the onset...but as the weeks have marched on, I know that I did the right thing.

Really think about what you could be getting into before you extend yourself so far. Always test the waters first. You will know in time..if that person is worth investing in. Believe me...you will know.

Wednesday, July 14, 2010

FAMILY REUNION...MEMORIES, FABULOUS FOOD & LOTS OF LAUGHTER!!

Recently, I attended our bi-annual family reunion on my late Dad's side. This was the 2ND one without him...and also the first one for me, since I had my brain surgery...which made me realize, that I had not been on a road trip for almost 2 years. WOW!

My cousin took Mom & me up to Bowdon...which happens to be the town where I grew up. The event was held at our local community center.

Bowdon is about 100 miles from Bismarck, so we saw some beautiful crops on our journey. The flax was especially beautiful this time of year...and you should have seen all the hay and the sunflowers looked good too. They have had a lot more rain than we have.

We made a stop to the cemetery, where my Dad is buried and some of my other relatives as well. His tombstone still looks beautiful after almost 3 years. There is a badge engraved..as he was Chief of Police..and the funeral director, thought this would be a nice touch. They really keep the grounds looking really nice.

We arrived at the community center around noon and right away..people were coming up to greet me. You see...some of us have gotten connected on Facebook, so I had the advantage of knowing what some would look like..as I had not seen some of my cousins in over 20 years.

We had some old friends from our church who were there, as well as some new faces. We had over 80 people in attendance. I thought for a one day event...that was pretty awesome!

The food was great. We always do potluck...so we had a wide variety..from hot dishes...to salads and loads of desserts. Needless to say...we had plenty and nobody went away hungry!

After we were done eating...we had a program. One of my cousins was the MC and did a fine job...keeping everything organized, etc. My cousins, aunt, uncle, sister, brother-in-law, nieces and great nephew...all did a fine job of singing.

We also had a time of sharing memories...I shared my previous blog I had written on Dad...in honor of him. My cousin from another state shared a letter with us...as she was unable to attend. We also had many stories and jokes.

We had a lot of laughter and even some tears...as we remembered those who are no longer with us.

I had a great time...and some of my cousins are even talking of attending the next one in 2 years. It was great to see so many young people in attendance..as they are the families of the future.

I was glad to be a part of this..as it all begins with family.

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!

Thursday, April 22, 2010

SERIOUSLY...WHAT'S UP DOC?

Okay...as many of you know, I am a BT survivor. I have been dealing with real bad bouts of nausea for quite sometime. I was told by my PCP the other day...at my annual physical, that it may just be something, I will have to live with for the rest of my life. That would be fine, except for the fact that it would be nice to be able to learn how to cope.

This week was to be a much needed vacation for me...instead it ended up being jammed packed with doctor's appointments. I now have a new problem! Surprise! It seems never ending for me. If I sound a bit frustrated...you are right, only I am beyond that stage I am angry!

You see...about 3 months ago, I ended up having problems with my hands..the left being worse than the right. I also battle Rheumatoid Arthritis, so I just thought maybe it was something that would last a few days then leave. Guess what folks...this one is not leaving. Turns out I have the start of carpal tunnel syndrome. Why must everything be a syndrome? Sounds so mysterious...to me.

They did a little exercise to determine and sure enough, I failed with flying colors. I saw my rheumatologist and he referred me back to that neurologist...that I absolutely can't stand...he, being the one I saw prior to my brain surgery. I have to have an EMG...which will determine how bad my carpal tunnel actually is. I will tell you...I get numb most every night and wake up not being able to do the simplest things. If it is bad enough...they will probably have to inject...which I have no problem with...provided, it would get better.

The real kicker is...I can't have this test until May 19TH! That's nearly a month away. In the meantime, I have to continue my duties at work, etc.

The reason I entitled this particular blog using "What's Up Doc?" is the fact that my Mom recently just finished making 2 caps for me to wear at night..for the awful head pain I sometimes experience. It actually is made out of material with that beloved cartoon character...Bugs Bunny. It's blue and he is dressed up as a doctor...with his carrot of course. She had enough material for 2...so that I can keep one at each place. That way, there is never any danger of me forgetting to pack...when I stay with her on weekends. Imagine me...forgetting anything? HA!

So I had my blood tests...not all have come back yet. I have been told that in one month...he wants to hear, that I have been walking 30 minutes a day. I live in ND mind you...not the warmest state to be walking all the time. He also says that exercising more... in addition to walking, could help my fatigue.

Now just let me ask you this? If you are so tired in the morning...that you can hardly get out of bed...how in the world can you perform this miracle? I am here to tell you...that I will give it my best shot...like I do everything else.

In the meantime...I would really like to be let in on the mystery...of all of these pesky medical problems...that keep showing up.

So I ask you again...Seriously...What's Up Doc?

Tuesday, March 9, 2010

JOURNEY TO THE CENTER OF MY BRAIN!!!

This blog really comes out of what I have been going through recently. As you know, all of my writings come out of personal experience. They say experience, is the best teacher.

Anyway...I am happy to say...that it has now been 18 months since my brain surgery. WOW! When I say it out loud...it is just so unbelievable to me.

So much has happened. I have definitely developed some real different coping mechanisms. You have to really...this has become such a different kind of lifestyle.

One of the things that has changed along this journey...is my ability to write. I would have never been doing this prior to brain surgery. I guess it's true...that you really do become creative, after going through such an ordeal.

I also really feel much more sensitive to everything really. Noises, especially high pitched sounds...literally send me through the ceiling.

I also have developed a new habit of pretty much wearing my cozy cap to bed..most every night now, as well as on weekends..when I don't have to go out. It truly helps alleviate some of the severe head pain..that I experience at times.

I also have to be very careful not to bend over suddenly or a wave of nausea..just seems to wash over me. It can actually happen just sitting...really no rhyme or reason.

My balance is certainly somewhat to blame in all of this. I just haven't been able to find the right combination to counteract this. I will in time..just need to be patient.

Also along this journey...I also manage to hold down a full time job...which is a challenge to say the least at times. I am so fatigued by the end of the day...but I feel good in retrospect, that I can accomplish this each day. Some people in my position...are not working.

One thing that people who have had brain surgery have in common, is that our life is forever changed. It may be a hard pill to swallow...but we just need to make the best of it and continue along this journey.

I realize, that there are things that I must do also. I need to take good care of myself...by getting enough rest...a balanced diet, exercising, drinking plenty of water and taking my vitamins. I also have been able to get off some of my medication..for which I am really grateful.

I also have things that I enjoy doing...like reading, laughing and now my latest hobby...writing my thoughts.

It has been really great for me personally, to realize that I am not alone in this journey. In fact, I know, of numerous, ladies and gents..from my support group, Meningioma Mommas...who are on this path right along with me.

It's so uncanny, I will go there and read how someone's day has gone...and I am saying to myself...I feel just like that. It makes me feel somewhat human.

One thing that you all have to do..if you are tired of hearing about our journeys..is to..as one of my mommas so bluntly said..."Suck It Up" This is something that happened to us...and if you are truly our friends, you will allow us the courtesy to share some of what happens to us on our journeys. After all...we listen to you, when you share what is going on in your life. I know I do, and it's seems to be a fair trade off in the long run.

So there you have it...a complex journey, if you will. After all, it involves the brain. I also being of the frontal lobe community...become emotional very easily. This can actually be a good thing...I just don't fight it anymore. It comes from the fact..of that being the high functioning level of my brain.

This can really make your head spin...and I mean literally.

I hope you have enjoyed my chance to share my Journey To The Center Of My Brain with you.

Sunday, February 7, 2010

HEAD CASE!!!!

This particular blog is dedicated to my Meningioma Mommas, The American Brain Tumor Association, any one who is a brain tumor survivor, or has a brain tumor, that cannot be operated on at this time...and to any one who has ever experienced a traumatic brain injury or a head injury in general. I realize it encompasses a lot of people...but I really want to give you all a sense...of what this kind of lifestyle is like for many of us.

I am no expert by any sense of the imagination. What I write here, is from personal experience and also out of much frustration and misunderstanding from many...who don't or haven't experienced this.

By the time..you have read this, I hope you will have a better understanding, of what some of us go through on a day to day basis. That's just the point, we need to keep on keeping on with day to day activities. Life does not stop, just because we were diagnosed with a brain tumor...benign or malignant..or experienced a head injury of some sort.

But this blog...will be primarily about what I have been experiencing along since November of 2009.

On and off, I have been experiencing severe HEAD PAIN...not HEADACHES..as so many along my path keep saying. I also along with this have been having real bad bouts of nausea at times.
The HEAD PAIN...could be for several reasons. Scar tissue, changes in the weather. Living in ND that can be a constant thing. LOL I have tried to cope with that for the most part...by using cold packs, drinking plenty of water...and using Tylenol when necessary. I also have started wearing a cozy cap to bed..at the suggestion of one of my Meningioma Mommas. It has really helped. I can't explain the scientific reasoning for it...but who cares! It works, so don't knock it, until you have tried it...right? My neurosurgeon...said when I told him, "Whatever works." I'm with him on that.

Because of my constant nausea...and again having problems with tilting my head back or forward, without feeling like I was going to hurl, he sent me to see a neurologist.

I had just had another CT head scan...which was CLEAR! I was really happy about that...at least we know, nothing is lurking in there.

So I went to this neurologist, who evaluated me..had me do some simple steps to see if my balance was off. Touch my finger to my nose..that sort of thing.

She still felt that I needed to go to a balance center..for further tests to possibly determine the cause, of the nausea. She also wrote a prescription for Neurontin (rotten) which is an anti-seizure medication. Now in her defense.. the reason they prescribe such a med is to try to stop that firing sensation..that sometimes occurs inside our heads. That being the HEAD PAIN! You will see me referring to this many times, as I am trying to convey once and for all that these are not your everyday typical headaches.

Well, I only ended up only taking 2, because I experienced such a bad reaction. Several in fact. The first one was my joint pain acting up as, I also battle Rheumatoid Arthritis, as I have mentioned in previous blogs. Believe me, I am a regular walking medical case, and I have learned much along my journeys. There have been many. Anyway, back to my second reaction, my mood swings were just terrible. I became so angry and frightened. I cried because at that time, I just felt so hopeless. I realized at that moment, that this particular type of medication was just not for me.

So the next morning I called my nurse and told her my experience. She also agreed, that it was okay to stop. There was really no danger that I would experience a seizure...because I quit before anything could really happen. If you do take this type of medication on a regular basis and you wish to get off, you have to wean yourself off very slowly or you could actually experience a seizure. It's very scary stuff here, FOLKS!

I also called and left a detailed message with my neurologist and explained that I had been in touch with my primary doctor's nurse, etc. She didn't even bother to call back. This was a RED FLAG to me. Why wouldn't you even call back, if for nothing else, but out of concern, because I stopped the medication?

She had also scheduled an MRI, which I decided at that point that I would do, but nothing else regarding medications until something was determined. This was truly frustrating. This is why you have to be PRO-ACTIVE when it comes to your health. Learn as much as you can and for goodness sake, don't ever be afraid to ask questions. Remember, this is happening to you and you alone, know more about your own body than ANYONE else!

I am really ranting here...but I am just so sick and tired of believing that everything our doctors tell us, especially if it can be bad for us, to take as GOSPEL! Use your heads! If you don't think you can handle a doctor's visit on your own, by all means, take a trusted individual with you, who can also ask questions along the way.

So I tried to recover that day..with resting and really not doing much else.

My next step was to go to the balance center. My physical therapist...was very kind and understanding of my situation. We took things slow...but even that turned out so wrong. When she tried to do a test on me...I was set off so bad...that it took almost a week to get back to normal. What she did was...have me lie back with my knees toward me and hold on to her elbow and then turn by head first to the left...which went pretty okay...it was when she turned me to the right...that I was set off so bad...but she wanted me to hold on for just a little while longer.

By the time...she raised me up...the nausea was just so bad...and I instantly become very warm and very unsteady. She felt so bad. I realize, she was only doing her job...but this was terrible!

So it was determined...that I probably, don't have what they call positional vertigo...which usually involves the inner ears...but something more centrally located. We did talk at length about a week later...but she was very honest in the fact...that she probably couldn't help me...because she was pretty sure I wouldn't be able to tolerate any more of her testing.

Another reason it was determined that it probably wasn't postional vertigo..is that when you are brought back to your original position, that you recover quite quickly..as was not the case with me.

So here we were again...frustrated and feeling very depressed about this whole issue...as my nausea was just not getting any better.

But the Friday...before, I took some steps upon myself. First...I remembered when I was on a particular drug for my RA...that I took Ginger Root...after suffering nausea for about 2 years prior. It seemed to work really well...and thought...what have I got to lose? I actually felt pretty good that evening..and could actually eat a little.

The other things I did and they may seem desperate to you...but that, was what I was. I decided to cancel my MRI and any more appointments with my neurologist. I was disgusted with the fact...that no contact was ever made...and as far as the MRI was concerned...I had just had a clear CT just recently.

I contacted my PCP's nurse and told her what I did. She said that was fine..but she was still so concerned about my nausea. She asked me what I wanted to do? I told her...just to wait out the weekend and see how I felt on Monday. Well Monday came...and I really wasn't feeling much better...so he wrote me a prescription for a anti-nausea med...that you put under your tongue...and by Wednesday...I was feeling much better.

We are just going to monitor this situation. If the nausea becomes unbearable again, then my doc wants to see me again...and possibly, set up another appointment with another neurologist.

I write this...because hopefully someone reading this may be going through a similar experience...with frustration of feeling lost and afraid.

With some of my birthday money...I purchased a CD of one of my all time favorite singer-songwriters...Neil Sedaka. In his jacket he describes songwriting as a catharsis...getting it off your chest, if you will. That's exactly, how I feel about writing my blogs.

So...my journey continues. The other night...I was awakened with SEVERE HEAD PAIN and not a HEADACHE! You just learn to cope with these things...and tell yourself, that it will get better...because it did.

I am so very glad that I have my support group...Meningioma Mommas..and most of all, for it's founder, Liz Holzemer...who will be a 10 year M survivor herself, on February 11TH. Now...that is really something to celebrate!

I hope this has really given you a sense...of what life has been like..as of late. Oh sure...there will be more ups and downs...that's just how life is. As I said before..in one of my previous blogs, "It is what it is."

Now...is it HEAD PAIN or a HEADACHE? I hope once and for all...you really understand, that it's truly the first.

Us head cases have to stick together and support each other...that's how we get through each day.

Sunday, January 10, 2010

REACHING A MILESTONE BIRTHDAY!!!!!

January 9, 2010...which was Saturday, was my 50TH birthday. I have to admit to everyone reading this...that I am quite proud of that fact.

For one thing...I do not look my age...so turning 50 didn't bother me in the least.

Throughout the week, I received birthday cards from relatives & friends...from all over the country.

I got several emails from cousins..who are in other states... an animated card...which was just the neatest thing..from someone..who used to live here...but is now in another state.

I had many well wishes from people on Facebook. Speaking of Facebook, I had a birthday wish to raise $100.00 for the cause," Mad About Meningiomas." I am happy to say, that $70.00 was donated...which I think is pretty spectacular. For those of you who donated...I thank you very much for your generous spirit. You are doing a great service to Meningioma Mommas.

My Mom wanted to have a birthday party for me...but she needed my help. So we drew up a guest list of various ages. It was to be a cycle of life party...and I have to say...it turned out pretty good.

The ages ranged from 50 (me) all the way up to 94. We managed to have someone in every decade. That...I thought was really neat.

My Mom is going to be 87 this month and I think she did a fantastic job..with the invitations, etc.

Another thing we did was set up a collage of pictures...ranging from when I was a baby to the most recent. That turned out real neat! : )

Everyone who was invited to the party...was asked to share a special memory, they had of me. It was amazing...how when they started sharing all those good memories...that I instantly was right back there...remembering as well.

I think the neatest thing that happened...was the son of one the moms that was there..called and I got to talk with him for a bit. I consider him to be my little brother. What a great surprise!

I also read the blog I had previously done on my Mom..here, "Crafts & A Mother's Love." The reason I wanted to share that...was because my Mom is just so special to me and I wanted everyone there to know just that. There were actually tears...as I was reading it.

Our lunch consisted of two items from the Meningioma Momma cookbooks. One was a punch and the other my favorite...Frozen Strawberry Pie for dessert. We also had meat, cheese, crackers, mints & nuts.

Everyone had a great time and we had a lot of laughs. It ended with hugs, good wishes...and plans to get together more often.

All in all...I think it was a way in which we reconnected. I had not seen some of these people in quite sometime.

So...I reached a milestone. It can only get better from here.

Thanks for allowing me to share my very special 50TH birthday celebration...because it was just that!

Thursday, January 7, 2010

DOCTOR TO DOCTOR : )

This blog is actually going to be written in 2 different parts. The first, I have lived with Rheumatoid Arthritis for over 18 1/2 years. The second part will be about my life as a Meningioma brain tumor survivor...thus far.

On to the first part. I really can't even believe I am writing this. I have pretty much avoided rheumatologists for the most part...over the years of living with RA...primarily, because they have been so negative. They would say things like..."You are going to get worse." Just wonderful! That's the last thing..anyone living with a chronic disease...needs to hear. : (

Well...this time was very different. He entered the room...so upbeat and extended his hand and get this..he bowed. He is from India...and very polite and speaks excellent English. That was really a nice change from usually, not being able to understand what they are trying to say.

He actually commented on my being so knowledgeable about my disease and seemed very impressed...that I have taken such an interest. The thing here is folks...either you let this disease beat you..or you decide that you are going to learn as much as you can..about how you can cope. Knowledge is power...I really believe that.

We discussed how when I was diagnosed and what meds I took. He also mentioned something very interesting. He said that the RA was actually probably beginning back in 1988..when I went to the famous Mayo Clinic...for my costochondritis..for which I had some cartilages removed from my chest wall..later that year. It usually starts up in the primary joints..such as the wrists, hands, feet or ankles. Mine began in my wrists and ankles. My ankles used to be so swollen at times...that I could hardly put on shoes. My knuckles would be red and swollen at times too.

Well today..he said I have no joint deformity whatsoever. He also asked me if I have seen other people with RA who have? He also said that with the drug I am using and have been on for over 8 years now...that I AM IN REMISSION! I never thought...I would ever hear those words.

He of course...just wants to be sure...nothing else is cooking. So on to Radiology and Lab...I went. First...they did x-rays of my hands, ankles and feet..which have never been done to my knowledge ever! Then they took 4 vials of blood. No wonder...they call them vampires! lol

All in all...I was very happy with my visit to this rheumatologist. He was very kind and actually let me ask questions...such a difference. He said I am doing so well...for someone with RA and also mentioned that back in the day...when these kinds of meds were not available..that people like me, would not be working.

During the course of the exam...it was really hard to hold back tears..because he was just so wonderful and constantly acknowledged...that I knew what I was talking about.
I finally met with a doctor who gets it. It was just awesome...which was a word he used a few times during the exam. I thought that was really cool! He ended the visit..by again extending his hand. What a great visit! : )

On to part two. I had my head CT today...and thankfully...I got the ALL CLEAR!

I did see my neurosurgeon (NS)...after the scan. He showed me the comparisons between the one done after the brain surgery in October of 2008 and today's. It really was quite different!

He said that there is no real explanation for the severe HEAD PAIN and nausea...when I bend down or tip my head back. For that reason...he recommended I see a neurologist. I told him I would not see the one...I did before. Just so happens that there is a lady on board. I am going to see her next week. I believe this is a smart move..because I want to get to the bottom of this ASAP!

The one thing that he did say and I was so glad to hear...was that he would not have to go inside my head again. What a relief!

He is still just as kind and professional...as he has always been. He extended his hand at the end of the visit..and said it was nice to see me again.

He said for now...just try and stay comfortable with OTC pain relievers. I also mentioned that I was wearing a cap to bed and that it really seemed to help. His response...whatever works! I liked that!

I also realize...that this just maybe something I am going to have to learn to tolerate...for possibly the rest of my life. Think about it..when they drill inside your head..there is bound to be things that are possibly rearranged. I don't know...but that is how I see it.

At any rate...I have really found out this week, just how many great friends I have.

I just want to thank you all for your words of encouragement, thoughts and prayers. As my new rheumatologist said to me yesterday...it went something like this.."We don't know everything...but He knows all."

So my life as a Meningioma brain tumor survivor continues. I will continue to spread the word, to anyone who is willing to listen.

This has really turned out to be a blessing in disguise for me. I'm pretty sure I would not be writing...had it not been for this experience.

Life has a way of throwing things at you, when you least expect it..but it can really turn out to be a blessing...if you just let it. Remember...always look for that open door.

Well...that's my 2 stories combined into one blog. I am really fortunate...that I have such great doctors...who care and respect me. That is just so rare!