I'm Tired of Epilepsy

I'm tired.

I'm tired of not being able to read since brain surgery.

I'm tired of working so hard to repair my brain from the surgery.

I'm tired of being the world's worst "Epilepsy Blogger" due to how little I can provide for fans.

I'm tired of feeling that I do nothing all day long.

I'm tired of my doctors constantly giving me medication.

I'm tired of thinking this, and then beating myself up because I know they're only trying to help.

I'm tired of the money my poor family has to pay to purchase my endless medications.

I'm tired of what these medications do to me.

I'm tired of wondering what they do to my kidney and liver.

I'm tired of wondering when I am going to die.

I am tired of wondering if it will be a seizure's fault.

I'm tired of falling apart without these medications.

I'm tired of gaining weight when I take these medications.

I'm tired of jogging daily, and never seeing a pound drop.

I'm tired of never feeling beautiful on these medications.

I'm tired of the endless list of side effects of these medications.

I'm tired of worrying about what these medications will do to the children I hopefully live to have.

I'm tired of thinking that I shouldn't even try to have children with all of these medications.

I'm tired of the thought of seizures taking over without these medications.

I'm tired of the thought that panic attacks will kill me without these medications.

I'm just... tired of epilepsy. I don't know how to do this anymore. I always wonder if I would be happier without my medications. I dream of how much healthier my body would be. I don't even know if I would really mind seizures anymore. I just want my life back.

Goodnight.

EpilepsyBlogger

Money is Tight This Year

The new year is here. While it feels great to be done with last year, it also hurts because I feel the holes that are burning into my pocket now that insurance has restarted. No more "You've hit the deductible, so you're good to go!". We're back to pulling out all the cash, checkbook, and credit cards. 

Just got a call from my doctor's office letting me know that tomorrow's appointment will be a little more than $100, and if the doctor does a quick (2 minute) test on my VNS (Vagus Nerve Stimulator) it will be an extra $240. I seriously think I have just had a heart attack seeing these numbers again. And this doesn't even include the cost of my meds. I am hoping I can get some permission to come off of a medication or two...

God, please keep me calm. 

9 Days, 3 Tablets, No Seizures

Brain surgery is now officially 9 days awake. So we're at a number less than 10 - this bothers me. But I'm more calm about it now than I was a week ago. I have a strong feeling this "calm" mood will change, but I'm enjoying it while it's here.

I got my Klonopin tablets today. The dose is 1 mg, three times a day. They are the Clonazepam ODT tabs, rather than the actual pills I had before in which I needed to swallow. I kind of like these because they work more quickly, it seems. They're doing an excellent job of controlling the seizures because I've only had one seizure along with three auras the entire day. This is amazing news. (I couldn't type that to sound more excited, right?)

These Seizures Won't Give Me a Break, Break, Break...

Today is one more of those days filled with seizures... And if it wasn't seizures, it's been a massive headache that could knock out an elephant. Surprised I even felt well enough to make my family some homemade peanut butter cookies (photo) and sit down to give an update. But I assure you all, as soon as I'm done writing this, it's back to bed for EpilepsyBlogger.

I didn't get too much sleep last night due to a lot of slight simple partial seizures. These seizures are less frequent and not as normal to me as others, so they freaked me out like you wouldn't believe. I didn't run upstairs to scare the parents, and did my best to relax until they passed. Finally I slept around 3:00am and if I had to rate my sleep, I'd say about an 8 out of 10 stars. So not too bad.

Toxic Medications + EpilepsyBlogger's Delicious Purple Detox ShakeRecipe

Medication, medication, medication... It often makes me shake my head. Why? Because of all the harmful side effects - not to mention the hidden side effects - and because of the fact that we are literally dependant on it, being people with constant seizures. After knowing those two facts, the real question is, what can we do to keep our bodies pure and free of as much toxin as possible?


Before I go on, remember that I am NOT a doctor. These tips are all perfectly safe and will indeed help with many things, but pay careful attention to anything that may cause you irritation or allergic reactions, and always ask or inform your doctor before making changes to your diet. Make sure you are meeting your daily caloric nutritional goal. It is always good to let your doctor know so he or she can monitor any improvement, or make changes to your treatment to assist your lifestyle.

So with all that being said, grab a pen and paper and let's begin!

For starters, I'd like to begin by telling you just how medications are toxins to our body, even though they help control our seizures and other illnesses at the same time...

Think of your body like your skin. It has pores, hypothetically, which would be your liver and kidneys. They can get "clogged" by all the chemicals from your medications.

- The liver is responsible for filtering the body's blood, which would also be metabolizing any drug that is ingested. Some medications can be toxic to the liver, causing inflammation, jaundice and cirrhosis, a chronic disease where the liver develops excess scar tissue.

- One potential side effect of epilepsy medication is toxicity, which occurs when the medication level in the blood is too high. This can result in blurred vision, fatigue and stomach discomfort.

Many people including myself feel this after taking a dose of medication that is too strong. Be sure to let your doctor know if you are feeling this as it can be dangerous and deadly in some cases. This can lead to the issue I first mentioned, which is toxicity to the liver.

NOTE: Drinking a few glasses of water can help, as sometimes you are dehydrated making the blood/ medication ratio too slim.

- Over time, medication that has built up in our bodies will wear away at healthy tissue and organs and slow
performance in many forms. This can be noticed in several different ways. The most common for those taking AED's or Epilepsy medications would be:

~ Weight gain (Slows metabolism, keeps body from absorbing nutrients correctly, damages organs needed to help metabolism).

~ Osteoporosis (Basically the wearing away of your bones and joints) and Arthritis (Joint pain)

~ High blood pressure and heart problems. (Result of weight gain)

~ Unhealthy teeth and gums (Along with bad breath that seems to come back even though you have brushed). Bones and teeth are one in the same, therefore they can be worn down too.

~ Thinning hair or bald spots. (Lack of nutrients in the body can cause this or can happen as a result of stress caused by medication).

~ Acne (Something that doctors have said is near inevitable for those on Epilepsy meds), blisters, boils, rashes, and other skin problems.

~ Digestive issues such as ulcers, Irritable Bowel Syndrome (IBS), Crohn's disease, and more. (Pills and medications contain acids that tear away at stomach and digestive tissue. Medications can also interrupt the body's natural digestive acid levels.)

So how can we prevent or keep these seemingly-inevitable side effects in line so that they don't cause major harm to our bodies in the long run?

- Drink the right amount of water. You've heard it time and time again in regards to everything from maintaining your weight, repairing the digestive tract to having clear skin. It sounds bogus, but I can guarantee water plays a major role for all of these things! Drinking at least eight 8 oz. glasses of water a day can seem like too much... But it's what your body needs! At least for the average person. People taking medications have to drink even more water than the average person! So go ahead and try for ten 8 oz. glasses a day, minimum.

God created water for a reason... It's good for us! But not all people think it tastes good. So, if the lack of flavor is too much, try adding a drop of natural peppermint extract, a sice of lemon, or even some apple slices and a stick of cinnamon! These are all great ways to flavor your water because they calm hunger and they are natural, zero calorie options!

- Get more calcium for your bones and joints. Drink your two glasses of milk a day, and eat foods that are good for your bones and joints. Check out this WebMD article about foods for strong bones and joints. Since milk doesn't always do the job when you're older, you may want to find a good supplement. Osteoporosis is very common with AED's and can lead to all sorts of issues that many wouldn't experience until their senior years.

- Eat foods that help your body detoxify. Pretty much anything that grows from the ground! But make sure it is fresh, otherwise it won't do a thing for you! Fresh food will aid in digestion and repair the digestive tract.

Be sure to check out my detox shake recipe below - makes a great meal replacement once a day for any meal you'd like. I find dinner is best for me as it helps with my digestive issues by allowing me not to have to add solid food to my stomach overnight, or fast foods that are hard to digest.

- In regards to my last tip, avoid as much pre-packaged or fast foods as you can. These foods have grease (fat), chemicals, dyes and preservatives that get lodged within our bodies. Not only making our bodies more toxic, but also affecting the weight gain factor that accompanies medications. This step alone can even help clear up acne!

- Get a good, sweaty workout at least three times a week... You don't want to push yourself too much if your body can't handle it. Great workouts include jogging, bike riding, boxing, dancing, and swimming. Be sure to work out with a partner to avoid injuries. On your "rest days," aim to take a 20 minute walk for your heart health and relaxation.

- Talk to your doctor. If you notice side effects, write them down and don't hesitate to ask your doctor. They could be far more important than you may realize.

- Also, if you are unsatisfied with the heavy amount of medication you are on, let your doctor know that too. Sometimes lowering a dose by a pill wont affect successful treatment. There are also other treatment options such as a VNS (Vagus Nerve Stimulator), the Ketogenic diet or Atkins diet, a Gluten-free diet, or brain surgery.

- Avoid any unnecessary medications. Try chicken soup instead of loading yourself on cough syrup this winter. Use peppermint oil and lavendar oil on your temples when you have one of thise small headaches that will probably go away anyway... Instead of taking that Excedrin. Does your stomach hurt? Drink some organic aloe vera juice and cold water with a drop of peppermint oil. You get the point.

So folks - be aware! Medication is dangerous if you don't maintain your body while you take it. Follow these steps and you'll feel so much better. Here's that delicious recipe I promised! God bless and stay tuned for the acne article coming this Saturday along with TONS and TONS of giveaways every day this month on Twitter, the Facebook page, and right here on the blog! WIN FREE Epilepsy Alert bracelets along with memberships for free medical information storage, plus gift cards to some great stores and restaurants!

EpilepsyBlogger's Delicious Purple Detox Shake Recipe

Ingredients:

*12 ounces organic Acai Juice

*6 ounces organic almond, soy, or regular milk. (If your seizures are sensitive to soy, avoid also the almond milk and use regular whole milk.)

*1 cup frozen wild blueberries

*1 banana (chop and freeze an hour in advance)

*1/2 cup frozen raspberries

*1 Tbsp Whole Ground Flaxseed Meal

*1 cup coconut water ice cubes (You can save the rest of the coconut if you bought it fresh and throw a few chunks in for fiber)

*1/2 cup chopped Kale leaves

*1/2 cup barley grass

*1/2 cup baby spinach leaves

*1/2 tsp apple cider vinegar (MAKE SURE TO ADD THIS!)

*1-3 dashes cayenne powder (Or more if you like things spicy. 3 dashe gives a fantastic kick, but it wont burn your tongue. You'll love it!)

Yield Two Servings

It's best to prepare the night before by heading to the grocery store, purchasing ingredients and freezing what needs to be frozen. Blend until smooth and drink up! Leftovers can be poured into an ice cube tray and blended again the next morning, saved for lunch, or shared with a loved one.

Sassy Water ( All-natural detox drinking water that tastes awesome!)

Ingredients:

2 lemons
1/2 cucumber
10-12 mint leaves
3 quarts water

Prep Time: 5 minutes
Chill Time: Overnight or 8 hours (Allowing mixture to chill and fuse in a closed container creates a natural detox.)
Yields: 10-12 glasses

NOTE: Do NOT replace meals with this water.

Neutrogena - Sweet, sweet relief! + Review

It's been another week and a half. Some improvement, but it's off and on due to the withdrawals. I can tell you that I am having the best results with products that I have had in years which is a major breakthrough for me - and right in time! The photo below was taken two mornings ago. I had one random break out yesterday, but the new products I am using have really cleared a lot of that up. I guess I wont be getting rid of all my acne any time soon, but if I can keep it controlled enough to the point where it looks invisible under a thin layer of makeup - I'm happy as can be!

If you're curious about what miracle products I am using (out of the hundreds I have tried in my life) that are finally working, don't worry. I wasn't going to keep that a secret from all of you! All the products are products of Neutrogena, and I am in no way being paid to write any of this. It is simply my opinion being shared out of pure joy that this stuff actually works!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

1. Neutrogena Rapid Clear Treatment Pads - These are the most powerful of all the products I have been using to kill my ugly acne. They contain a full 2% Salicylic Acid, and can be used up to three times a day which is a gift from God in itself. Any product that I can use three times without my face peeling off is good in my book. Within a day of using this I saw a huge reduction in my acne. Mind you, I've gone through every brand in the beauty isle PLUS Proactiv. None of it has worked. I realized that I had never tried Neutrogena (recently) so I bought these and fell in love. I am totally hooked.

2. Neutrogena Rapd Clear Acne Eliminating Spot Gel - You only get half an ounce of this stuff for $6.00, so I wasn't loving the idea of making this purchase. However, my handsome boyfriend being the sweetie he is, decides to surprise me with some sort of lovely evening this Saturday... He wont tell me where he's taking me, but all he has told me is I need to dress up. So what that left me thinking was "How do I dress up with this massive zit on my chin?!". The zit I had was probably the size of a dime - nothing I have ever experienced before. It was round, red, and sore - 4 week healing time MAXIMUM. Of course, I wanted it gone sooner. Therefore, I decided to go with Neutrogena again since the treatment pads were already working so well on that big, fat chin zit. But this stuff... This stuff is just as fabulous. It killed that zit within two days, bringing it to about 1/3 of the original size and removing all the redness.

I will warn you - it removes zits by drying them out. I noticed the smaller zits woud just disappear when covered with this product, but the larger zits like the one on my chin were literally peeling off of my face. Most of this thankfully happened in my sleep, but I did have to wear my sunglasses to the grocery store twice. I can tell you that it's well worth it.

What's even better? The zits get killed completely and do not reoccur! Miracle! I've been using this for two weeks and I am not really coming close to running out of the stuff. So the small amount is no longer an issue and the results are so good that I don't think it would matter!

3.  Dermatologist Recommended - I do want to NOTE before telling you about this product, that there is soap bar by Neutrogena that looks exactly the same. Make sure you're buying the acne-prone skin formula! They are both non-medication, but they are different as far as ingredients go and I found that this bar was the only one that worked. An easy way you can tell the difference is that the acne-prone skin formula has a red label, and the other has a blue label.

Now, this bar is truly divine. I have never felt so refreshed after cleaning my face. My pores feel open and it's like a breath of fresh air for my skin. I don't really know any other way to explain it. It lathers up quite easily, and rinses off easily as well. All you need is some warm water, your hands, and this bar of soap!

I would NOT use this as your only acne treatment product, as it does not contain Salicylic Acid or any other sort of acne treatment agent. I would definitely pair it with one or both of the other products I mentioned. It is rich in glycerine, so if you have extreme issues with dry skin, going for the non-acne bar may be better as it is less harsh on the skin.

I added the bar of soap two weeks ago today and I am very satisfied with my results. I would try each product one at a time since they contain Salicylic Acne which is a drying agent. I have a good friend who has used only the treatment pads for about a year now without any cleansers or other products. But I found that alone, they were not enough for me because my skin is excessively oily right now.

Below is an example of how I worked each product into my regimen and you can definitely consider following the same routine. I am *NOT* giving advice in place of a doctor, so please use your own personal judgement of whether this regimen is ideal for you and your skin type.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

First week:

Morning: One treatment pad

Noon: None

Night (right before bed): One treatment pad


Second week:

Morning: First, wash with soap bar. Pat dry and apply one treatment pad.

Noon: None

Night: First, wash with soap bar. Pat dry and apply one treatment pad.


Third week:

Morning: First, wash with soap bar. Pat dry and apply one treatment pad. Add a SMALL amount of spot treatment to any large zits in serious need. You don't want to use a whole lot of that product where it is not needed.

Noon: Apple one treatment pad. Apply spot treatment if needed.

Night: First, wash with soap bar. Pat dry and apply one treatment pad. Add a SMALL amount of spot treatment to any large zits in serious need.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Hope you enjoyed today's post. I thought since I get so many e-mails asking about acne treatment that it would be helpful to share what I am using as a successful treatment right now. Especially since we're all on anti-epileptic drugs and that is the cause of our acne. Please let me know if this was helpful!

God bless,

Mandy Krzywonski

Engaged... with Epilepsy: Jackson & Jennifer - Part One

By: Jennifer

Hello Jennifer! Introduce yourself and your loved one.

My name is Jennifer and I am 28 years old. I have had epilepsy for almost 4 years. Life changed drastically from the very first seizure. I remember being very confused over everything including thinking "How this could have happened to me in the first place?" and where my life was going to go from that point on.

It's Getting Old.

Hello my friends,

It's 3:04am.... Wait, wait, wait. This sounds familiar. These blogs are all starting to sound the same! Things are getting a little old around here with my insomnia, aren't they? Oh well, nothing I can do about it but press on. Right?

Today wasn't the best day. I woke up for work at 6:00am, took a shower (Oh God, why would I shower?! That's only the one place I have most of my seizures!) and ended up having a seizure, falling down and hitting my head against the tile. Nothing new, as this has become an almost everyday thing for me for the past few years. Well, minus the hitting my head on the tile part. That has only happened a select few times. At least there was no blood this morning.

I had to call into work. My manager didn't sound at all convinced that I was serious about having a seizure. People never seem to be convinced anymore... Even my family. It's like all I hear is "Don't tell me that crap." or "It's just an excuse." I cannot stand it. Do I need to fall naked in front of them again, convulsing and bleeding from the mouth for them to see that this is still very real? As a matter of fact, didn't that very thing I just mentioned happen only a month and a half ago?

I met with Dr. Szabo yesterday and we lowered the levels of my Vagus Nerve Stimulator implant by two notches. We're not sure if my brain was more comfortable with the level it was at a while back or not. My seizures have begun to go crazy as of a month or two ago, and that's when we took the stimulation up two notches. So my doctor is basically trying to take me back to where I was and see if I'll be okay again. Back when I thought that I would finally be able to get off of my medication. But judging from the incident this morning, I'm not sure if that's going to happen.

We talked about getting my temporal lobe or even both my left temporal and occipital lobe removed. So surgery is back on the table and no one is stopping me from getting it. I've about had it with medication, and I'm starting to completely regret having the VNS implanted. I believe that my only purpose for receiving that implant was to simply be able to share my experiences with you all. I don't think it was the right treatment for me.

I've tried almost every medication out there except for Sabril. It sounded promising to take at first, but the fact that my peripheral vision is already slowly going away, and vision loss runs in the family, I wont be giving Sabril a chance. It's far too expensive and the 25% chance of vision loss is not something I am fond of risking.

I've scheduled an EEG with video monitoring in about three weeks here. To sum that up, I'll basically be recording the electrical activity that occurs along the scalp of my head from my brain. I'll be taken off all of my medication, and I will be FORCED to play video games, play with my cell phone, work on the computer, and stare at flashing lights until about three seizures occur. This way, doctors can pin-point the area where most of my seizure activity comes from.

It sounds violent, and I wont lie - it might as well be a crime to do this to people. Unfortunately, it's the only way to help a person with Epilepsy. But don't worry, I will be blogging as much as I can during my hospital stay and I'm sure my mother will be right next to me with a camera taking embarrassing pictures of me after my seizure like she always does. I still don't know why she finds that okay to do, but maybe if they aren't too bad, I'll share one with you all.

After the EEG I will most likely have to repeat my Wada test or ISAP test, named after Canadian neurologist and epileptologist Juhn Atsushi Wada. It is an "intracarotid sodium amobarbital procedure" used to establish cerebral language and memory of each hemisphere in the brain. It's quite fun actually... aside from all the pain in which I am practically immune to now. They make an incision in my groin and insert a pretty thick catheter into my artery and release a barbiturate into my brain, one hemisphere at a time.

No pain killers can be given, since they affect the way your brain works, so pain is something that you have to deal with. A local can be given, but it only helps that first layer of skin from feeling any pain. It does not get rid of the pain that comes along with pushing the catheter up through your body until it reaches your neck. They claim you should feel no pain, but I was on the verge of tears during my last Wada test. So it's all a lie!

The fun part is after the barbiturate has been released. Your eyes feel like they are being pressed on for a few seconds, and then the doctors try to see if you can read, recognize objects, talk, etc. After the drug has worn off, they see how much you can recall. It's a lengthy process and quite painful, but it's amazing to go through it all and get to experience these crazy things.

I remember the entire time I went through my Wada test I got to stare up at about 20 screens above me, all showing different angles and views of my brain. It was practically a live MRI/X-Ray. Totally awesome to see. I'm hoping to get a recording this time so I can share it with all of you. It's really up to the doctors though. Hopefully, if I do get a recording, no one cracks a joke about losing their wedding ring in my groin. That was totally not funny!

I know this blog sounds very negative, but these things aren't exactly pleasant to talk about. I assure you, though, I have a positive attitude about all of this. I'm hoping to still be a surgery candidate and get these pieces of my brain taken out as fast as possible. I want to be seizure free so I can further continue my advocacy without these pauses that many of you notice. I no longer want to say "Sorry folks, my blog posts will be delayed for a week or two due to some seizure activity".

Until then, I'll make due. Please stay tuned for more Epilepsy, A Love Story pieces and be sure to check out the following pages... and my CONTEST which will be running for the next week. The prize isn't HUGE - only a $15 Amazon.com gift card and two FREE RedBox movies. But it's just a kick-off contest for some of the bigger ones that I have coming soon! This contest requires no purchase or any of that wacky "apply for a credit card" crap. It's a simple sign up, and all it takes is some quick participation and you're entered! Even better, you can enter each day!

To enter the contest, please see my CONTESTS page!

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Back On Weight Watchers



So last night, my boyfriend and I went to McDonalds. McDonalds is a place I've avoided for a year, and being there caused me to "let go" and just go overboard. I watch what I eat on a regular basis. It's really the medication that causes me to be this size, for the most part. Even so, I know that if I watched more closely I could lose at least some of the weight.

How to Live Well with Epilepsy - Part II - Self Control and Lifestyle Changes

One thing that almost all people with Epilepsy struggle with is self control. We see others out doing things that we wish we could do. Now don't get me wrong - Epilepsy should not hold a person back from being who they want to be - However, the sad truth is that some things should be avoided by people with Epilepsy in order to stay healthy.
In order to practice self control, one must make certain lifestyle changes. Some changes are easier than others to make, but with practice and a good support system, these can be achieved. Here is my ultimate list of what I have found to be the most helpful lifestyle changes. So read on to learn what these changes can do for you and your struggle with Epilepsy.

Know Your AED's

There are currently 20 approved AED (Antiepileptic Drugs) available on the market, aside from their generic forms. To a person with Epilepsy, it may seem like there are a million different drugs in which we are being switched to and from all the time. If one drug doesn't work out, our doctors shuffle us onto the next drug - the journey never ends for some people.

Ehhh.... Female Health Blog? I wouldn't read this if you're a boy!

The past few days have been absolutely miserable. The entire student body has come down with some nasty cold. It's a cross between a severe sinus infection, strep throat and H1N1 (that's at least how it feels). On top of catching this nasty cold last Sunday, my seizures are flaring up like a cold sore. Does anyone else experience more seizures when they have a cold? It seems like that happens to me a lot. But on the other hand, I'm going through my transfer from Vimpat to Felbatol. I'm crossing my fingers though!



I also wanted to bring up something that women don't usually talk about EVER, much less on their blogs... PERIODS! So I've been calculating what I spend, and I realized that I spend about $30 a month on my feminine hygiene products. At my local H-E-B Grocery, a box of my favorite tampons is $7.50 (ish). A small box of panty liners is about $5. And looking at my last receipt, those dreadful, overnight pads (a.k.a. adult diapers) cost almost $10.00. To be safe, let's add that pack of thin pads we use just in case that costs another $7.50. It's ridiculous. So let's add that up.

$7.50
+ $5.00
+ $10.00
+ $7.50
_________
$30.00... exactly. And that's rounded down a few cents plus tax.

So the same day that I realized this, I was looking up a place online where I could buy tampons, and pads cheaper. Instead, I found out about something that I never knew existed: the menstrual cup. It immediately sounded like something totally disgusting and painful, but as I read on, I realized that many women (mostly outside of the U.S.) are absolutely in love with them. It makes sense because one cup can last up to 10 years, but they recommend you replace them every 1 to 2 years. They also have virtually NO leaks for up to 12 hours. Each cup is made of medical grade silicon, so no bacteria can live upon its surface. You simply clean, and reuse. I went to a gillion different sites and every single testimonial said the same thing: "I love my cup". There are even YouTube channels, support groups, and even hotlines for troubleshooting and questions. There are no shown medical risks from using a menstrual cup, only benefits! Many women report no longer having cramps since the menstrual cup sits lower in the vagina than a tampon. Not to mention (this is new to me) that tampons are bleached and contain absorption chemicals and pesticides that can be harmful to you! Best of all, there is no risk of getting Toxic Shock Syndrome. I was pretty much sold after reading the testimonials and watching the youtube videos, and after much thinking (and looking at my reciepts) I sat down and picked out my own cup. There are a variety of brands, most of which are in other countries but they still sell internationally...

The Keeper/Mooncup: USA
The Diva Cup: USA/Canada

SheCup: India, Brazil, Canada

MiaCup: Africa

Lunette Cup: USA, Finland

MeLuna: Germany (These are too cute)

LadyCup: Czech Republic, USA

FemmeCup: United Kingdom

Fleurcup: France

The Green Donna: Brazil

MPower: South Africa

Yuuki: Czech Republic

Two upcoming brands are the Alicia Cup and Naturcup from Spain.

I shopped around, compared prices (and levels of cuteness) and I decided to go with a LadyCup. It looks like this:



Mine is actually turquoise but I couldn't find a good picture of one. They come with one cup, a cute little storage bag, a box, and instructions. After everything I've read and heard, I'm anxiously awaiting my cup (and my period!) so I can try this thing out! At only $35.00, it's a great price to pay for something you can reuse for a year or more. I just wanted to get the word out for those of you who might not know about this great alternative. I am definitely going to be doing a review post once I've tried mine out! I'm sure you are all thinking it's very scary looking but I encourage you all to go green and try something new!

Also, if YOU aren't necessarily interested, there is another great thing about menstrual cups. As you know, there are many places in this world where women are confined for a week each month because they can't afford tampons, pads, etc. On top of all the stress they have each day, worrying about their periods shouldn't be life's biggest problem. If you go to the Femmecup Website you have the option to buy a cup and GIVE a cup to a needy woman in another country! This could be a gift that will keep on giving time and time again. If I knew this before hand I definitely would have bought a Femmecup first :)

Hm, well that's all for tonight. Check em out, maybe you'll like them, maybe you wont! Have a good night and a happy period!

My first day of senior year - gone wrong.

As you all know, I'm on three medications. Epilepsy meds are very strong and that means there are very strong side effects as well. For me, my most common daily side effects are double vision, and the inability to walk. This lasts about 3 to 5 hours after taking my medication. But sometimes these side effects return throughout the day with a vengeance.

Today was my very first day of school, and I'm proud to say it was my senior year. However, my day was probably the opposite of what I had hoped it to be. My normal medication schedule is to take one dose at 6:00am and one dose at about 9:00pm. Obviously, due to the side effects and the time that school starts, this had to
be moderated. We decided I would wake up at 3:00am (as if I was even asleep at
this time...) and take my first dose, then after school at 5:00pm I would take my
second dose. It seemed like a fool proof plan. If you're good at math, this means you
know that by taking my medication at 3:00am leaves exactly 4 hours to pass those
horrible side effects. But unfortunately, for some reason, that was not the case. The side effects lasted until 11:00am and would come and go. Thankfully I could walk, but I walked close to the wall. Dizzy spells were on and off, and at one point I actually fell right on my butt and almost hit my head on the hard brick wall. Thankfully no one saw me because I was already late to class... Which is not good. I had double vision the entire time which made EVERYTHING hard. On your first day of school, basically you are just filling out papers in every class with your name, grade, birthday, phone number, etc... And it is very hard to do when you can't even see the paper.

So basically, my first day of my last year in high school was everything I didn't want it to be. It looks like it will be another year of homebound schooling at home. This means I don't get to be with all my friends, I don't get to be in the year book and I don't even get to go to prom. The only chance I had to go to prom was last year... And my boyfriend of two years (who I left a month ago) went with another girl and never told me. So I didn't get to go. Yipee!

just a little update an how I've been feeling. Basically my side effects are worse and I'm dealing with them everyday. I even fell in the middle of church two weeks ago. I make it a point to go each Sunday whether I'm sick or not and that really backfires on me a lot. This blog post is off of my cell phone so I'll proof read it later, excuse any typos. God bless you all and remember to pray for all the little children, infants and older who have Epilepsy and suffer everyday. I encourage all of you to choose one of the great Epilepsy foundations and donate whatever you can for Epilepsy research or to help take care of the children and even adults in need. I believe there is even a site were you can donate to help dogs who have seizure disorders. Do what you can and make a difference in someone's life.

- Mandy Krzywonski

Coping with Memory Loss

Many people with Epilepsy experience memory loss. Epilepsy itself can cause major damage to the brain; top it off with heavy medication and you're bound to be forgetful. I'm writing this blog to show different types of memory loss I have experienced and some great ways to get yourself back on track.

To start off, there are three types of memory.

* Procedural memory -
Activities which are carried out almost without thinking, for example, riding a bike.

* Semantic memory -
Knowledge that has been acquired but we are not sure when, for example, capital cities.

* Episodic memory -
Personal memories of everyday life.

So like I said, first, my semantic memory began to lag. After that, my episodic memory got worse and worse. Feelings of deja vu came frequently, and I couldn't tell if I had been to that place before or not. I couldn't always recall what I had done the past weekend if someone were to ask me.
My procedural memory, as well, started to get very bad. For example, once I was unloading groceries and put a head of lettuce underneath the sink along with a carton of cottage cheese. Literally, about two minutes later I was asked where both items were and I didn't even recall seeing them. Sometimes I would hassle my parents all day long to be taken to the store to shop for something like a new pair of flip-flops or a dress. I would know exactly what I wanted up until the very moment I walked into the store - then, I would immediately forget. I almost hurt my brain sitting there confused, trying to dig out the memory that had vanished in a split second. I would get embarrassed and I would fear getting scolded by my parents so I would pick out something random and buy it. Later on in the day, week, or even month I would randomly remember what I needed to buy.
During homeschool classes I would be asked questions to review the sections that we had covered in our lessons. Names and terms that I had known since I was a child would completely slip my mind. Not forever, but only when I needed to be able to recall these things. My teachers began to think I wasn't studying or that I was just a below average student. This frustrated me very much because I was a straight A student up until 7th grade, when I began getting sick. I would tell my parents but they never saw it as anything serious.
After seizures I would lose my memory for almost a week. I remember one seizure where after I recovered, I looked at my cell phone to see a text message from my boyfriend - only, I didn't recognize his name or who he was. I asked my sister, and she said that it was my boyfriend and I started to cry. It took me a whole day to remember him.
Memory loss is a scary thing, but I have found ways to help ease the frustration.

- Dictionary.com : You are probably wondering what this link is doing here. As you all can tell I love to write, and apart from that I'm a student. Many times when I'm writing I can forget a simple word such as "wonderful," but I can remember the word "great". I could sit there for 30 minutes until I remember "wonderful" or I can type in "great" on Dictionary.com and look at similar words... voila!

- Sticky notes: If you walked into my home and took a look at my bathroom mirrors, walls, and all of my school work you'll see sticky notes everywhere. As soon as I know that I need to do something I grab a sticky note and jot it down as fast as I can before I forget it. I always put the notes in places where I can see them, like the bathroom mirror as I mentioned before. When I wake up in the morning to brush my teeth, my daily to-do list is right in front of me.

- Utilizing calendars, planners, and cell phones: This is a must for an Epileptic, or any person dealing with memory loss. At the beginning of each week I write down everything I know that is going to take place in my planner. It's hard to get used to, but if you stay committed to your planner it will save your life! I've gotten so used to my planner that as soon as someone, such as a teacher, wants to meet I go right to my planner and make a time slot for them. I usually use my Franklin Covey planner, but I have gotten this trendy new Palm Pre Plus cell phone that has a wonderful calendar. Speaking of phones, make sure to save every phone number that you think you might possibly need again in the future. Phone numbers aren't easy for anyone to remember.

- Reminders: It's hard to remember daily tasks, so that makes it even harder to remember really important things like doctor appointments. If you ask your doctor's receptionist or nurse, they can call you on day in advance or even same day to confirm your appointments. My doctor's office actually sends me letters in the mail to remind me as well as phone calls. If your doctor's office doesn't provide these reminders, make sure to always let your family and friends know if you need help remembering something. They are there and I'm sure they would be glad to help you out.

- A Pill Box: I use a weekly, am + pm pill container to separate my pills. Being on many different medications can be tricky, so always use a pill box. Using a pill box allows you to check if you already took your medication, know when you need to take it, know what medications to take, and to help you know when you are out of medication.

- Get a balanced diet: It is important to eat three healthy, hearty meals a day. Food gives your body energy which acts as fuel to power your brain. Foods high in antioxidants and omega-3 are great for your memory. If you are not able to eat good meals during the day, you may want to talk to your doctor about starting a vitamin supplement.

- Free time: Always keep some free time in your schedule. This will leave time for you to check around the house and see if you forgot to complete a task, or just leave you time to relax and reboot your mind.

- Sleep: Number one, most important of them all. Everybody needs sleep. Just as food acts as a fuel to the brain, sleep does the same. Sleep helps your body recharge and gives you more energy. Get a good amount of sleep at night; 8 hours if you can. Try to get a small one hour nap in each day when you feel too tired.

If you have memory problems like me, I suggest you try using some of these tactics and I guarantee it will improve your life. They can't help with all of your memory loss. You might not be able to remember the word "wonderful" but you can be sure that you'll make your 7:00am appointment to the dentist on time!

God bless you all and goodnight!
Mandy Krzywonski

Breaking the Chains of Epilepsy

Photo called "Chains" by Amanda Krzywonski (me)

I understand the frustrating feelings that come along with being Epileptic. There's fear that your medication will fail you, especially when you need it most. There's shame to be in front of a crowd, or even in front of your closest friends and family. You wonder, "what would they think of me if I dropped down into a seizure right here in front of all of them?". It's a scary thing. Just as important as any other popular disease such as Cancer, Crone's Disease, AIDS, HIV, etc. Society spends so much time focused on these other diseases, that it can make Epileptics feel lost and alone.
I remember walking down my high school hallway hearing whispers and yells saying "Hey, it's that retarded girl!" or "Isn't that the seizure girl?!". I remember hearing and seeing all the rumors and other disrespectful and demeaning gestures toward me. Having a seizure in front of the whole art class was not something I planned, but Epilepsy doesn't care what times are convenient for you.
Just the medication itself is frustrating. I swear to God, these medications have been like a ball and chain on my life. I've tried Trileptal, Depakote, Topamax, Vimpat, Keppra, Zonegran, and many others that I can't even remember. None have successfuly stopped my seizures. And the ones that kept my seizures even slightly under control gave me horrible side effects that made it hard to get up each morning and live a normal, healthy life. Extreme weight gain, weight loss, blisters, rash, infections, kidney problems, liver problems, high blood pressure, hair loss, migraines, trouble swallowing, insomnia, rushing thoughts, and hallucinations to name a few. Being a teenager, this is too much to handle on top of going to school, doing assignments, spending time with friends and attempting to date.


Photo called "Side Effects" by Amanda Krzywonski (me).
Taken after cleaning my brush during a stage of hair loss
due to Epilepsy medication.

I remember at one point that I was too ashamed to tell a soul about my Epilepsy. But now I want to tell the world. I want other people like me to know that they are not alone. I go through what millions of other horribly misunderstood people go through everyday. Some are diagnosed, but others are just pushed away as crazy. Epilepsy has been wrongfully mistaken for tons of other conditions such as schizophrenia, bi-polar disorder, depression, migraines, and even plain insanity. It's even happened to me. So remember guys and gals, there's someone else in this world just like you. Look to the sky and start living your life, even if you feel tired and worn. And believe me, I know sometimes you do. Continue supporting our disease so that one day we can find a cure and break the chains of Epilepsy.


P.S. - If you think you have Epilepsy, but are being misdiagnosed for something else, check out some of the links in my sidebar. They will clear up your questions of all the possible types of seizures and seizure symptoms. Make sure to visit the link "40 Different Types of Seizures". It's a great article that can help break down the confusion you get when you're wondering "is this another type of seizure?" or "where is this weird symptom coming from?". Print out or write down a list of your symptoms to take to your doctor. It helps to try and research the medical terms and names of your symptoms. I know the feeling of trying to explain something to your doctor and being stuck there feeling like a complete idiot. Also, feel free to message me about weird symptoms you have. I might have had them too... actually I probably have had them all! I love feedback! Goodnight, and God bless you all.

P.S.S. - The photos were all taken by me and can be found in my photo blog called "Slow Down and Look at Life".

Day #8 - VNS Device Activation

Today is day #8 of my VNS Therapy experience. About an hour and a half ago my VNS device was activated for the first time. It was really interesting (at least I thought so). I sat in a chair next to my doctor's partner as she pulled out the communicative device or as she called it, "the wand" which communicates directly to the implant. When the orange light started to flicker on the wand, I knew that the device was connected. She programmed the device for about 5 minutes, and then activated it. She set me for stimulation lasting for 60 seconds with 12 seconds in between. Unlike what I have heard from others, I barely noticed that the VNS was on unless I tried very hard to sense it ticklling in my throat. I agreed that it was okay to take the stimulation up to a higher dose. This time I could definitely feel the device working. It feels like a slight tickle along with some tightness to the throat. It is not too bothersome to me...yet. I think that over time I can learn to ignore this sensation. I noticed that when I talk my voice crackles or breaks up VERY slightly. A person would not notice unless they were specifically looking for this characteristic. My doctor said that I reacted very well to this therapy compared to some other people.

When I tested out the VNS stimulation using the magnet, I had some difficulty. It's hard to use, but my doctor said over time it will become easy. You have to give a slow stroke over the machine. Depending on the model, you may either have to move the magnet directly over your chest from right to left. In my case, I have model 103. So I swipe the magnet from the top of my chest slowly to the bottom. I'm sure I will get the hang of it because I have seizures daily.

I am thankful that today went well! Some people strongly dislike this treatment, but it's working out great for me so far. I will be blogging constantly to let you all know how it's going. To recap the current side effects there is: a feeling of tickling, tingling, or tightness of the throat during stimulation. But for me this is very light and unbothersome. It's hard to sing, so if you are in choir be sure to tape the magnet over the VNS implant. Doing so will stop stimulation, letting you use your voice as normal. So far this is all. I will also be decreasing my medication dosages a bit, so let's see if this VNS does any magic for me.