EpilepsyBlogger's Women - Welcome!

Hello ladies! I'd like to welcome you to a new series of posts which will be called "EpilepsyBlogger's Women". These posts will be dedicated to helping women with Epilepsy specifically, since we experience an entire spectrum of issues that men do not, simply because we are women and our bodies have been designed to carry children. These problems range from our "monthly gift" (or should I say, our monthly gift from hell?) to choosing whether it is safe or not to concieve. None of it is easy, and I have prepared several posts full of reviews on awesome products, resources and tips from doctors and medical specialists, and lots of other information to help you on your journey.

You can send your questions about the topics below to me by e-mail at MandyKrzywonski@EpilepsyBlogger.org or on Twitter @EpilepsyBlogger. I will accept questions for the next 5 days!


- Irregular or "intense" periods. This was my first to mention because it is one of the most common. And not only that, but it isn't always caused by Epilepsy. It can be something that runs in the family, or something you had all of your life. And what is so interesting about irregular periods? Well, they can also interfere with Epilepsy - it isn't always the other way around. This is why being a woman is so tricky when it comes to Epilepsy.

Irregular periods can mean a range of things. This can mean you have periods that are not always on time. Maybe you find that you have two periods a month, or a period that comes whenever it feels like coming. It could mean that your period is very, very heavy... or sometimes so light that you hardly recognize it. Your cramps may be so intense that you find yourself in tears, or you might notice a severe migraine during or approaching your time of the month. These are all problems (although I wouldn't mind a light period, to be honest!) and they can be caused by your seizures due to the change in hormones.

However, on the other hand, your body's change in hormones can upset your seizures and make them more frequent. It is quite tricky figuring out if the Epilepsy is to blame or your body's naturally off-track hormones, but there are ways to help no matter who is guilty. I will write about some tips to help keep your period on track, offer resources to learn more about these issues, and even answer questions you may have about your time of the month/hormones.

Click here to read more in-depth about IRREGULAR PERIODS.


- Yeast Infections/ UTI's. Irregular periods and some AED's can cause vaginal yeast infections, bacterial vaginosis, and even UTI's in some cases. This article will be brief, but it will cover a variety of things you can do to decrease the likelihood of these infections. I will offer links to articles by doctors and health professionals to give you more information along with answering your questions!


- Metabolism and Weight Gain. This is a problem for men too, but women seem to have the biggest struggle due to the fact that our metabolisms are not as strong as men's. Women may gain ten pounds due to the addition of a new AED, while a man may only gain one or two pounds. There's nothing worse than going out on Friday night and feeling like you are the largest of your friends, or realizing that your work pants don't button anymore. This article will contain tips to help control your eating, a list of questions you can ask your doctor for help on your weight loss, and even some links to great healthy recipes that you'll love!



- Fertility. Many women worry about having children because of the fear that something will go wrong. One of the biggest worries for many is fertility. Being on so much medication, and having seizures seems like enough make a woman's fertility disappear. Thankfully, that is not the case. Some women with Epilepsy have been shown to have slightly reduced fertility, however, this is usually treatable in a number of ways including the following:

• Hormone-based fertility drugs
• Contraceptive pills (birth control pills)
• Reducing your AED's
• Increasing your AED's (Some women are more infertile when they have too many seizures)

Click here to read more in-depth about EPILEPSY AND FERTILITY. You should also ask your doctor if you have any concerns regarding this topic as it is very important to start planning for conceiving ahead of time.



- Is it SAFE for me to have children? This is a question women ask far more than you would think. There are a number of reasons women are worried about getting pregnant with Epilepsy. You may be worrying about the same things yourself.

• I am pregnant unexpectedly, what do I do? (If you are currently pregnant unexpectedly, be sure to call your Neurologist/Epileptologist AND OB/GYN as soon as possible.)
• Are my AED's too harsh for my body? (See FERTILITY above)
• Do my AED's cause birth defects?
• Can my body handle a pregnancy right now?
• Will pregnancy cause me to have more seizures?
• Can seizures cause a miscarriage?
• Can my seizures hard my child while still in the womb?
• Will it be okay for me to breastfeed?
• What if my Epilepsy is genetic? Will my child have seizures too?

There are a lot of steps when it comes to having a child as a person with Epilepsy. However, if you take these steps you can conceive just like any other woman. Granted, there will be what you might call "setbacks", but it has been done before and can be done with careful planning.

Click here to read more about PREGNANCY and EPILEPSY. Please consult your doctor if you feel you may be pregnant or if you are pregnant and have questions.



- Menopause. One of the most difficult times in a woman's life (as if we don't already have enough!). You may be approaching menopause, or just now starting menopause and you probably have so many questions you can't keep up. Some women experience seizures for the very first time as they go through menopause, and others find that their seizures disappear entirely. New types of seizures may start, but a lot of women notice no change in seizures at all. You may be curious if hormone replacement therapy will interact badly with your medication. No worries! I will be doing a wonderful article answering plenty of those questions with the help of the Epilepsy Foundation and other fantastic sources.

Click here to learn more about EPILEPSY AND MENOPAUSE. If you are approaching menopause and have urgent questions, please consult your doctor as soon as possible.

- Menstrual Cups. I will also be writing reviews for different menstrual cups. To learn more about them stay tuned for the individual articles and reviews, or see one of my older reviews for LadyCup HERE. This is a product I have used for years and it has completely changed my life as a woman for the better in so many ways. I have even purchased a few Diva Cups and will be GIVING THEM AWAY to a few lucky ladies! To give you an idea of why menstrual cups are awesome...

• Easy to use
• Far more hygienic
• Cost friendly: The average woman with regular periods spends between $48 – 84 per year on disposable tampons and pads. A menstrual cup is a one-time cost that can last up to 3 years
• Made from medical-grade, non-porous silicone which cannot hold or harvest bacteria. This means NO smell, NO discoloration, etc.
• Re-usable: Wash with warm water and antibacterial soap and you're ready to use it again! Lasts about 4-8 hours before needing to be emptied and washed.
• No leakage!
• Eco-friendly: Tampons and pads cause tons of waste to our earth. Menstrual cups cause ZERO!

 

I hope you are all excited for these new articles and please send your questions in to see them answered here on the blog! You can send your questions to me by e-mail MandyKrzywonski@EpilepsyBlogger.org or on Twitter @EpilepsyBlogger. If you would prefer them answered anonymously, please send them by e-mail with the word "ANONYMOUS" as the subject. Tweets will be shown with your Twitter name (Example: @EpilepsyBlogger) and photo.

MandyKrzywonski
EpilepsyBlogger

Duality - Finally Finished!

I know it's been a great while since many of you have heard from me. For your enjoyment, I have tons of health updates! [both good and bad.]

So, I recently met with my doctor, just last week actually, and I have a lot of news to share. My first bit of news is that I have managed to come down on one of my medications (Felbatol) from 3,600 mg a day to only 1,800 mg a day without any severe seizure increase. However, I have been having a spike of the smaller simple-partial seizures. We can't pinpoint an apparent cause for these seizures, but we do have an idea.

Before all this Epilepsy was diagnosed, my doctors had discovered a small pituitary gland tumor. It was decided to be "benign" since it wasn't growing. Unfortunately, both my family practitioner and my Epileptologist have a hunch that it may be growing a little bit. It is pretty serious, in a sense, but not deadly (at least in most cases). The surgery is quite simple thanks to modern technology, and it can be removed in less than 3 hours through my nostrils!

The hunch started when my menstrual cycle became extremely irregular about two months ago. I have been bleeding pretty much every other day with no rhyme or reason to it. I was bleeding what can be equal to about 1/2 a cup (think "baking a cake")of blood per hour. This is pretty serious. I had to get back on birth control pills, which didn't help whatsoever. It usually helps a lot, so that's when I knew something serious was going on.

Then, my armpits started to hurt very bad. They skin under my arms is even turning a brown/purple/red color, which is quite out of the ordinary for myself. I have very pale and almost porcelain skin underneath the makeup and the tan, so this isn't something you would expect. Apparently, the pituitary tumor (if it is growing or not) can be affecting my hormones in a way that would cause all of these issues.

Also, remember the acne problem? Well, it's still there! Even after changing medications. This is also a common symptom of a hormone imbalance and is very prominent among women with growing pituitary tumors.

So my Epileptologist has me scheduled for an MRI on the 22nd, and tons of blood tests before hand due to my kidneys and liver that seem to be having some acute issues.

My VNS implant has been turned up to a 2.5 level out of a targeted 3, and it is so uncomfortable I could complain about it all day. But it is definitely helping with the Grand Mal seizures, so that's all I care about!

All in all, I want to say I'm doing a lot better, but I'm not sure what to think of all this. On the bright side, one of my paintings is done and she's called Duality. This painting is dedicated to rape victims everywhere, and I hope you like it. She'll be going to a competition this Saturday, the 19th so pray that I come out with some recognition!



God bless you all and I wish you the best of health!

- Mandy Krzywonski

My LadyCup Arrived! (FULL REVIEW)

I'm so excited because my LadyCup already arrived yesterday, all the way from Czech Republic... Just in time for my period! I was just so surprised because I only bought it a week ago! Anyway, their shipping rate (about 4.99) was a great deal. I dare you to go buy anything in the U.S. with shipping lower than $7.00 and watch how fast it gets to you. You'd be waiting until Christmas day! Anyway, they shipped it in very good protective packaging. It was one of those sturdy envelope looking packages with tons of bubble wrapping inside. The LadyCup itself came inside it's cute little storage bag, which was also inside a tightly sealed plastic bag. They also sent me a big sticker! Not sure where I would put that but it was a cute extra.
Now, the next few details are a bit personal, but not too icky. I just feel like I can be personal with you all since most of you already know almost every tidbit of my life. You guys are great followers, and thank you for that!


This is the one I got, but I bought the organic bag instead of the one shown here. You can't tell in the picture but it's such a pretty color, it kind of glows.

Opening the package took about three minutes, and some scissors, but I got it done! Once I got the darn thing out I kind of got a feel of the LadyCup. It was much more firm than I expected, and much smaller. Like I said, I read up big time on these things, and most people said that the LadyCup was the softest cup. I've felt the Lunette Selene and it was about the same, possibly softer. (I can't imagine what the other ones feel like!). However, this wasn't a problem in the end. When you feel toward the bottom of the cup the silicon material is much, much softer. This makes it easier during removal. What I didn't quite like was that the stem of the cup is hollow. Silicon stays free of bacteria, as I mentioned before, so I'm not sure why this hollow stem bothered me so much. I just ended up cutting most of it off, which doesn't make a difference for me at all on insertion or removal.

The cup itself is really very cute. If you've ever seen the Diva Cup before, you'll notice that it's more about quality than it is appearance. I'm not putting the Diva Cup down because it is one of the most popular cups, but it isn't the cutest. The great thing about the LadyCup is that if for some crazy reason, someone looked into your purse, bathroom drawer, etc. and found this cup, they probably wouldn't even ask what it was. It looks like it could be some sort of Barbie accessory, or some piece that goes to something else. The Diva Cup right away looks like something "medical-related" because of it's lack of color, and the fact that it says Diva cup on it (along with marks to measure your flow).

The "firmness" of this cup seems scary at first, but it actually comes in a lot of handy, as I noticed during my first test run. This cup pops open very, very easily which is something you want in a cup. If this doesn't happen, your cup wont create a seal which can lead to leaks and quite a bit of pain after a while. I had no trouble getting this cup to pop open because it did it all by itself.

It took some trial and error to get used to the cup. If you ask another woman who uses one, they will say that with almost every cup (whether you have used one before or not) you have a few issues at first. I was ready for the issues... but I didn't have as many as some women. If you've used a tampon then you really shouldn't have too much trouble. It's similar, but NOT the same. After about 4 horrible fails, I finally got it right.

You seriously can't feel the thing once it's inserted correctly. You can contract those muscles all you want but you cannot feel this thing at all... and that's great. I wanted to do a great review so I did as many uncomfortable things today as I could to see if I had a leak or if I was uncomfortable:

1. Yoga - I have been practicing yoga everyday now for the past two months, and I'm at the intermediate level. If you've ever done yoga, you know how much it will stretch your whole body. I did all 34 of my daily poses and I didn't feel the LadyCup at anytime during my practice, nor did I have any leaks.

2. Pilates - Pilates is similar to yoga, but more fast paced. Sometimes it can be considered an aerobic exercise depending on what you're doing. I did an aerobic pilates session, lasting 25 minutes exactly. Still didn't feel it, and no leaks.

3. Jogging - I had to watch my dog today because he's getting in all sorts of trouble, so I had to stay indoors, however... you can jog anywhere! I have ExerciseTV on demand, and there's a great instructor who shows you how. The 45 minute video starts off on a power-walk, and eventually you are jogging in your own living room! If you don't believe me, check it out! (It's actually something I really like to do, you seriously break a sweat). I still did not feel my LadyCup, and I didn't have a leak.

4. Doing the Splits?! - Never in my life have I been able to do the splits... until today. Just for you! Yes, it hurt my legs but I still didn't feel that cup, or have a leak!

5. Sleep - Have you ever tried to take a nap wearing a tampon or a pad? It's uncomfortable right? And worst of all, you wake up with a leak... Well, as you probably already guessed, I didn't have one!

So basically, girls (and guys?), the LadyCup is just my new best friend. I know a friend of mine who I was telling about the LadyCup told me that the whole thought of it just seemed gross. Well, I can't argue there, because that's how I felt at first. But as I like to say, you never know until you try. When I first decided to buy a menstrual cup I basically thought, "Hey, if it will save me $30+ a month, saves the earth, and is better for my body, why not?". Now I'm really glad that I tried the LadyCup! It's not gross like everyone thinks it is. Once you try a LadyCup, tampons and pads will look messy to you!

In all truthfulness, women, we all know that pads and tampons can create odors that aren't too pleasant. It's a nasty topic, but it's a part of life and we all have to deal with it. I've really never dealt with this problem to a bad extent, but I know girls who have it much worse. Many women think it's their bodies that create that odor, but it's actually the pads and tampons. There is no odor at all with the LadyCup. I am a clean freak so I emptied and cleaned the cup after 6 hours (which is half the time that it is safe to use it). But even at 6 hours with a pad or tampon there would be some sort of odor that is unpleasant. The reason why is what I had mentioned before. Medical Silicon has no room for bacteria to make a home unlike tampons and pads. If you have this problem, that's just another reason why I encourage you to try the menstrual cup!

Lastly, many women state these claims: no cramps with the menstrual cup and no feeling of "wetness". I have had horrible cramps since the first period I ever had, and I mean horrible. The kind where you just want to sleep through the whole week, but you can't because they're so bad you can't fall asleep. Many women (do some research if you don't believe me) say that their cramps are literally gone when they use a cup. Doctors think it might be because the cup sits lower inside the vagina than a tampon does, creating less pressure, but it hasn't been scientifically proven yet. I'm not too sure but it's very odd for me not to have cramps during the first 3 days of my period. It's never happened even once until now. As far as those uncomfortable feelings of "wetness" go, they don't even exist. It doesn't even feel like I'm on my period!

Overall, I (obviously) give the LadyCup 5 stars. It's cute, durable, safe, and it offers maximum protection without making you pay $30 a month for products that are bad for your body! Not to mention it's an easy way you can go green! You might still be skeptical, but if you go into trying it with an open mind, you wont be disappointed. I know that I'm not!