Good Reads

Saturday, January 7, 2012

It's all in Your Head

If you haven't seen my book was released in October and is now available to purchase on Amazon and through Barnes and Noble.  My goal is to reach as many people as possible, in hopes that not only my story will help and inspire those going through any medical issue - but particularly brain cysts and brain issues.

So check it out....for you or for someone you know who think could benefit from someone else's experience in "dealing".....dealing with doctors, pain and suffering, and life.

I hope you will find it inspiring and find it in yourself to never give up!
It's All in Your Head

Friday, January 6, 2012

Don't Give Up!

Boy is it frustrating when you don't feel well, you have medical problems and no one seems to be able to figure it out!  You want to give up! 

It plays out as: you go to the doctor with a medical problem and they either cannot find the problem or they tell you that what they have found, "shouldn't be causing you problems."  They tell you that your problem isn't really a problem....essentially.  Boy that is frustrating.  Especially if you know that it is the cause of your symptoms.  You just know, in your heart of hearts, that the diagnosis you've been given is the root of all your symptoms.  But your doctor(s) keep telling you that your diagnosis shouldn't be causing your symptoms.  And in that case, good luck convincing your doctor.

That was exactly what I had to deal with when my cyst was diagnosed - my brain cyst.  Doctors just kept telling me that my symptoms shouldn't be, and weren't being caused by my cyst.  I was essentially being told to "get over it."  I was told that my type of cyst is normally asymptomatic and shouldn't be causing my problems.  Hmmmmm!  A gigantic water balloon on my brain and none of the neurological symptoms I was experiencing were being caused by the large water balloon.  It made no sense.

For months, as I continued to go downhill and developed one frightening symptom after another, I begged for help.  When help didn't come, I had to take matters, and my health, into my own hands.  I got second opinions, I read about brain cysts much information I could find about them anyways.  I read about the brain in general....what the different parts are responsible for.  And I began to put two-and-two together, and what I determined was that yes!  My brain cyst was the problem and now, I just had to get a doctor to believe me and one that understood these brain cysts better than other doctors.  Better than the doctors who had examined me so far.  So I put my investigative hat on and found a doctor in Arizona who was very well informed on brain cysts - very knowledgeable.

He operated, fenestrating my cyst first, then 4 months later inserting a shunt.  Everything was going well, until that fateful day when I met the doctor who would cause me more problems than what I started with.  Another disbelieving, non-trusting and finger-pointing doctor.  I will share that part of the story in my next post.....what this guy caused for me.  But I wasn't going to give up....I never did.  I almost did and there was a day when I seriously considered ending it all, but in the end, I fought to get the help and care I knew I needed.

Sunday, January 1, 2012

Journaling for Your Doctor

When we see our physician because we don't feel good, or we feel something is wrong, we have faith in our physician that he is not only going to listen to us, but believe us. Butting heads with your physician, or feeling that you have to convince him there is something wrong, can be stressful. It can add to your problems of not feeling well or possibly make your condition worse. You need your physician to be on your side and trust you. You want to trust him. And you want to feel that you and your doctor are a team when it comes to your health.

There is something you can do to help doctors understand you, and to show him that you do know what you are talking about. By following this step, you can go into your doctor with confidence to discuss your health. You will be organized and have your facts straight.

The most important thing you can do to help your doctor understand what is happening is to keep a journal. You should always journal your symptoms. By keeping careful note of everything to do with your symptoms, you will know what to tell him when you see him. He will have everything written down so that he can refer back to it and see if there is a pattern. You will be more organized and he is more likely to take you serious if you know the pattern of your symptoms and have a record.

Things you should journal are:

  • Date and time - Make sure to note the date, day of the week, and time of day the symptoms happened.
  • What you were doing when it happened - This can be important because it will show if there is a pattern; for instance, does it always happen at the same time of day? Does it always happen during certain activities? Does it seem to be sporadic in nature? Make sure to note everything about your activity at the time of the symptom or problem arising. Were you sleeping, jogging, doing dishes, driving, or sitting at the computer? Whatever it is, write it down.
Be detailed in description - Not only should you journal "what" you were doing, but how long the symptom lasted. If you can, notice the time of when it started and ended and write it down. If you had the symptom while standing washing dishes, write that. But if it happened while washing dishes, but you just happened to bend over to get something off the floor and that is when it actually happened, be detailed. It could be important that it happened while bending. Happening while you were doing the dishes may be true, but it actually happened at the moment you bent over, is important.

  • How long did it last? - Try to notice how long the symptom lasted. Get used to wearing a watch or notice the time when the symptom(s) started and when it stopped. Write it down right away so as not to forget it. If you are not always used to wearing a watch, try to start so that you always have a way to monitor the duration. It could be a big difference in saying that it lasted a long time, when in reality it was 60 seconds.
  • Diet - There are a few things you should journal about eating. First, note if you were eating at the time your symptoms happened, or how long before or after each meal. For instance, if it happened before you ate, how long before you ate? Or was it after you ate? If so, how long after? Did eating make you feel better or worse? Then, keep a separate record of your actual diet; such as, times you eat, and what you eat. Your diet may have an affect on your symptoms, so to note the details, may help your doctor. This should include all fluid intake during the day as well. Note all the fluid you drank during the day: what you drank, the time you drank, and how much you drank.
  • How much sleep are you getting? - Keep record of your sleep pattern. Maybe your sleep pattern is affecting your symptoms; whether it be that your sleep pattern is causing your symptoms, or the symptoms are changing your sleep pattern.
The more details you can offer your doctor, the better the chance that he will be able to help you figure out your problem, and diagnose you correctly. Also, the better your journal, the easier it will be for him too. To keep a sporadic journal; only writing things down every so often, or skipping making note of a symptom, the harder it will be for him to make sense of it too. If you're going to keep a journal, be diligent. You may be surprised at how much it helps your doctor, and you.