Good Reads

Tuesday, July 12, 2011

Should I Have surgery, or Shouldn't I?

Ok, so it has been over five years since I was diagnosed with brain sagging and my Chiari.  I have been putting getting it corrected for so long, but now, I no longer feel that that is an option.  I am at the point where I feel like I "have" to get it done.  I just hope that I didn't wait too long.

This fall, I plan on making a trip to New York to the Chiari Institute to see if anyone there can help me.  I know there have been changes over the years; I see them, I feel them.  My balance, as I've mentioned before, has really gotten bad.  I have seen a difference in my vision, my dizziness and more.  And the "more", is annoying.

I know I have to do this, or there may be no chance at all of them fixing these or helping these issues.  I was told a long time ago, that the longer I wait, the less chance there is in making things better....making a difference for me.  I don't remember what that window of opportunity was, but I hope I haven't missed it.

I am going to start being better about posting on my blog.  Especially as I start back to seeing doctors for these issues.  With my very bitter divorce last year, I really didn't go to the doctor.  I was already so burnt out on the whole "doctor, MRI and everything that goes with it" scene, that adding a divorce to my life just seemed like too much.  So I avoided going.  I was simply unable to muster the energy to take care of things with "me" like I used to.

I am keeping my fingers crossed that they can help me.  I am also keeping my fingers crossed that if I go through surgery - this major surgery, that it will make a world of difference for me and it will not have been in vain.

Fingers crossed!

Saturday, June 18, 2011

Sorry for the Delay.....

I am sorry for not posting in a long while. There has been a lot going on over the months and I have been very busy, as well as, the "busy" wipes me out and can make me not feel so great.

I have been busy with my book, for one.  It's getting close to time to get my book off to print and on to marketing, which I will be playing a big role.  I have also recently gone through a move, packing up a house and then unpacking and getting settled in my new home.

With having a Chiari, even though it has been approximately 5 years now, one thing that I have never gotten accustomed to is how tired I can get.  I get tired quickly and easily.  I am always running out of energy and steam.

Another thing that is really tough to deal with is the lack of balance.  I absolutely cannot stand that symptom.  That is one thing that I had to deal with, when I just had my Charcot-Marie-Tooth, and here I thought it was annoying back then.  Then I get a Chiari Malformation and my balance is no longer just a little annoying, it is non-existant now.  I think sometimes, "How incredibly stupid of me to have been so picky about the little balance imperfections before."  Now, I can hardly walk straight-up some days.  Now, one little mis-step and I am wobble-city.  I have to concentrate so hard some days, just to stay up on my own two feet.  And as bad as I thought it was back in 2007, '08, etc., now, in 2011 there is a marked difference in its progression.  Some days I don't even want to get off my couch much and do anything that's going to need me to walk too far, or have to use my balance.  It frightens me.

When I picture myself in about 5 years from now, I sometimes envision myself with a cane or something that will help me walk with better balance, and that not only frightens me, but saddens me.

I try, most days, to just block it all out of my mind.  I try to "pretend" for lack of a better word, that it is not as bad as it is.  I don't want to think about it.  I don't want to deal with it.  But on the days that I'm willing to confront reality, I know that having to deal with it is just around the corner.

Tuesday, April 26, 2011

Losing Me

There are days when I can't find a hint of my old self in me.  I will look in the mirror, and even there, the picture I see is of someone new; someone different than the girl I grew up with.  I hardly recognize myself at all.

There are days that not only do I not feel like I "look" like my old self, but do not feel like my old self either.  I used to be so vibrant, care free and full of energy.  I also had "feelings;" normal feelings that normal people felt.  At appropriate times I would feel happy, sad, excited, depressed, and everything in between.  I would consider my feelings to be very normal and appropriate.  Now, today, my emotions are hardly what I would consider normal at all.  I have found that over the past few years, the cyst has robbed me of my emotions.  Slowly but surely I have felt my affect change from what I would consider normal reactions, to abnormal.

What I mean is that something that may have happened in my life years ago; pre-cyst days, would have made me laugh or smile....or feel elated.  Today, something fantastic can happen and I will have virtually no reaction at all.  It's as if my brain is void of all emotion.  The joy I should be feeling, the joy I "know" I should be feeling, is anything but there.  I will have to force myself to put on a smile, or laugh or be cheerful; whether it is for my kids or other people.  It doesn't feel like a natural reaction to me anymore.  And I will always.....always catch it, and it will always baffle me or make me think....."why did that not make me genuinely happy?  Or why did I not laugh at that?  The old me would have found that hilarious and I would have laughed so hard at that."

It is a strange sensation.  I don't feel like there is anyone inside at times.  Like I am just a body taking up space and consuming air.  But my personality is nothing close to what it was pre-cyst days.  It's as if, when I had my brain surgery years ago, that part of my brain was nicked, or removed altogether.  I am not sure either, if it is truly physical or if it is more emotional than anything.  I am going to do some research into it.....speak to my doctor about it and get his opinion and I will let you know.   I have tried not to worry over the past couple of years as I've felt this emotional side of me slip further and further away, but it has actually gotten continually worse over the past, two years, to the point where I feel like I may wind up just a shell of who I was years ago and I can't do that to my boys.  I want my boys to get the "real" me.  I want to continue to be the mom I was years ago, that they were too small to really know.  I want to laugh and have fun with them....enjoy life, and now, I find virtually no enjoyment in anything anymore.

I will post my findings, if there are any.  I am hoping it is all just emotional....possibly stress after going through a very tough year with my health and divorce.  I am hopeful that it isn't anything physical; such as the cyst putting pressure on an area of the brain that controls emotions.  I just couldn't even begin to guess.  And I hope my doctor doesn't have to guess either.

I have had to lose a lot of things in life due to this cyst, but the one thing I am not prepared for, is to "lose me!"

Wednesday, March 2, 2011

The Motrin Meltdown

Living with a chiari malformation as well as with brain sagging, is not always a pleasant experience. Both conditions, in their own right, are painful and cause headaches and uncomfortable feelings in the head. When I was first diagnosed with both conditions back in 2006, I was given a prescription for Naproxen; an anti-inflammatory that is a little stronger than motrin. I was told this would help ease the pain and keep any inflammation down that may also cause pain.  I was given the lower dose of 250mg, rather than the stronger of 500mg, but told that if I needed to take 500mg every so often, that was fine....just take two 250's.

The Naproxen worked pretty well for me. I would wake up in the morning and after lying down all night, now my brain was wanting to sag since I was upright now and that caused a pretty good amount of pain, aches and discomfort. So, I would pop a Naproxen in the morning, and within a half hour, most of the discomfort was gone.  Evenings were the same thing; as the day wore on, my brain would sag a little more, tugging on all the nerves and vessels and I would be in pain by late afternoon or evening. So, again, I'd take a Naproxen and within half an hour I usually felt better.

The doctors were optomistic that over time my brain would make its way back up to where it was supposed to be, unfortunately, that would not be the case. My shunt had been adjusted to keep more fluid around the brain and this is what was supposed to help "float my brain up." But over time I learned that this would not be the case.  Despite months of having more fluid around the brain, my brain continued to sag, and my chiari remained. Unfortunately, this meant so did the pain and discomfort.  "Sure, you can take the Naproxen longterm," my doctor assured me when I realized that this may very well just be my life, popping a pill to help with the pain and discomfort. "Just try to use it only when you have to," which for me, was every day.

After a while, paying for the prescription every month got to be expensive, so I had an idea....if Naproxen is just a "stronger Motrin," why not just switch to Motrin?  I could get a big bottle of Motrin that would last more than twice as long, and cost much less.  So, without much further thought or even any research into Motrin and it's longterm use, that is what I opted to do.

I'm usually really anal about researching things.  I want to know everything about everything before I agree to it, accept it, or try it.  This time, I had convinced myself that it was harmless and because I had not been having any problems with the Naproxen, I figured that Motrin must be just the same....benign.  I did already know; however, that Motrin is hard on the stomach - so take it with food. And it can be hard on the kidneys and liver.  I made sure to take it with food and always drank plenty of fluids.

I suppose I should have done better homework on the subject and looked into "long term motrin use," myself, because as things slowly started to turn for me, I totally did not even correlate anything of what I started to experience, with something as simple as Motrin.

It was a slow and gradual turn; neurological issues that of course, I blamed on my chiari, my brain cyst and my neurological issues.  My balance started getting worse...I was wanting to tip over all the time.  Bending over became not only something I dreaded, but something I avoided. My vision started changing; I was seeing double a lot and even saw an opthomolgist and was ordered glasses - one lens with a prism to hold my vision straight.  My right eyelid had begun to droop more, I had weird and unnerving symptoms at night - my head felt strange, terrible dizziness lying on my back or left side, even excessive dizziness during the day.  I also began having long runs of insomnia. I was tired through the day and started to need naps.  I thought it was all because I wasn't sleeping great at night.  But eventutally, being tired turned into; "I had to sleep."  I'm not a nap person by nature, but by now, naps were part of my routine, and many times 2 or 3 naps a day.  Then, to top it off, I would be exhausted by 8:00, barely able to stay awake to get my kids to bed.  I was miserable to say the least, and still, I blamed it on the gradual decline of my chiari, brain sagging and stress.  You see, I am going through a very hairy and bitter divorce.  It's stressful, and stress can take a lot out of you and cause some pretty wild symptoms, so who was I to say that it wasn't all that I've mentioned.  My stress was aggravating all my other issues.  But then, one day....for whatever reason, I decided not to take my Motrin.  I thought I'd see if I could handle the discomfort without anything.  That day, as the day wore on, I felt better than I had in a long while. So the next morning, just beginning to question if it all could be the Motrin, since I knew that was the only thing I'd done different was to not take it, I didn't take it again all day and by the third morning, I felt more like my old self than I had in....well, I couldn't remember when.  My eyelid was even more perky than I'd seen it in a while, hardly drooping at all!  Hmmmm! 

Immediately I got online and started looking up longterm use of Motrin and side effects, and there it answer!  Everything that I have just mentioned is listed; double vision and visual disturbances, weakness, balance problems, insomnia, dizziness, everything!  Oh my gosh, I was killing myself with Motrin!  An innocent, over-the-counter medication that turned out to be "not-so-innocent" for me. It was a lot more potent and dangerous (for me) than I would have ever guessed.

I have been off the Motrin for over a week now, and although I still have some issues, they are much less and minimal compared to....and I would say "are" related to the chiari and brain sagging. This is what I "should" be feeling and dealing with with a sagging brain and chiari malformation, and not all the added neurological and other medical issues.

My warning to anyone would be to do your homework on everything. There is so much information at our fingertips now, and now there is no excuse not to look things up, read about it and learn. I wish I had, a lot sooner....a long time ago.  Because if I had, I would have saved myself the trouble of trying to fight to figure out what was wrong with me for several years now. I could have been living, rather than sinking into a deep, dark hole. But I know now, and that is what is important. I cannot go back, so I will go forward and make sure I always reasearch everything, especially when it has to do with medications. Now, I just try to muddle through some of the pain and uncomfortable feelings. I pop a single Tylenol when I have to have anything and do not take them daily. I am finding out how to relax the pain away, taking a few minutes to lie down to help it relieve itself, but not taking Motrin! No matter how benign and harmless you may think something is, do your homework. Ask your doctor questions....learn from my experience!

Saturday, February 12, 2011

My Book! "It's all in Your Head!"

Great news!  My book, titled, "It's all in Your Head," is due out this year!  This is my story of what I went through with my arachnoid cyst.  In this book you will follow my journey of what I lived through in trying to get medical attention for my brain cyst.  You'll read about the ups and downs of my journey to get treatment, the treatment I received, and the obstacles I had to overcome to regain my health and life.

My goals in writing this book, were to not only tell my story, but to encourage others who are going through similar situations; to never give up.

I will keep my readers updated on its release.  As of now, it is set to be out for presales in the late summer and on the shelves in the early fall, 2011.  So if you, or someone you know is dealing with any medical condition; whether it be a brain cyst or other condition, I hope that my story will help others and encourage them to never give up!

I am going to try to make the book available to order through my site.  I will also keep you updated on that as well.

Thursday, February 10, 2011

Symptom Checks

Strange symptoms can be unnerving. When you live with a chronic medical condition, it can be a frightening way to live. You are always on "alert" with what could go wrong next and that is really "no" way to live. But the truth-of-the-matter is, that is life.

With a chronic medical condition, it seems like there is always something new, some sort of symptom that is popping up. Just when you think you have sunk into a routine and things are ticking along; there's another strange symptom that you've never felt before, or had to deal with. Instantly you go on alert; "What was that?" "I've never felt that before." "Is that dangerous?" You begin to ask yourself a million questions and you instantly try to decipher where that pain or sensation came from. What caused it? And is it there to stay or just passing through? If it doesn't go away or happens often, then there's the infamous call to your doctor to get it checked.

It is a lot of work living with a chronic medical condition. You have to be on your A-game all the time. You don't want to take any chances and let a symptom slip by that could have been caught before it lead to bigger and more complicated problems.

One of the best ways to make sure you didn't miss anything, is by keeping a diary. And keep it handy. If you are a woman, carry a little notebook that fits easily in your purse. For a guy, you can get a little book that slides easily into your back pocket. Write everything down when you get a strange feeling or develop a new symptom.

Document things such as:
  • The time.
  • What you were doing when it happened?
  • Was there pain involved and how much - describe it on a level of 1-10?
  • Other symptoms that accompanied the original symptom, such as; did you feel faint afterwards, develop a headache after the original sensation, nausea?
  • How long did it last?
  • Did it happen more than once?
Anything you can think of to describe the symptom or odd sensation will be helpful to your doctor. Then, of course, if it happens again, this is even more beneficial to your doctor because it can show a pattern developing, etc.

Like your automobile, you need to stay on top of your body and how it works. Is it time consuming? At times. But it is important in order to keep your doctor updated and informed on your progress and problems. It is also important to help give you reassurance. If you do not know how to describe your problems or concerns to your doctor, he will be unable to give you answers that will help put your mind at ease.

Wednesday, January 12, 2011

Is my pressure back?

I never know what is what when it comes to my symptoms. That is what is so unnerving about being me. Like a car with a million problems, I am always having to check myself, "what was that I just felt," and "why did that just happen?" I have to do a quick run down of problems and symptom check daily. Many times I can figure it out, but not always. Like a problem that has developed this past year.

Several months ago I was sitting at my computer, late at night, and dozed off. What woke me was that I was getting a terrible twisting feeling in my brain, as if it were being wrung out like a rag, and then a horrible dizziness spread throughout my brain....a wicked dizziness that made me nauseas. I was confused, disoriented, and terrible weak and off balance. I tried to climb down from my tall kitchen chair and make my way upstairs to lie down. The symptoms lasted for at least half an hour, but finally subsided. It was frightening and unnerving. I couldn't figure that one out, no matter how hard I tried to think about what it could be. It would be the only time that happened for a few weeks - an isolated incident. Then, like I said, a few weeks later, there it was again....waking me up while I slept, the brain twisting, dizziness and nausea that ended with extreme weakness. I had no idea what this was, what was causing it, or how long it would last.

For months now, every now and again I get this. I also, over time, discovered that this happened primarily when I lied on my left side, so now, I have to sleep on my right side to ward these weird symptoms off. I have not had this newest development checked out yet by my doctor. When it doesn't happen for a while, I tend to put it out of my head...then, out of the blue, there it will be again.

I hope it isn't anything serious. My mother, a used-to-be-nurse, has mentioned nocturnal seizures. God, I hope not. I will keep a close watch on this for a while, and make notes of when it happens, and anything else I can think of to note to see if over time, I can find any common grounds as to what causes one episode and then another.

My car is obviously not in as good of shape as it was when I was younger. I have run out of warranties and now, I have to keep a close watch to make sure a major system doesn't go into failure.

Is my pressure back?