Showing posts with label Epilepsy Awareness Month. Show all posts
Showing posts with label Epilepsy Awareness Month. Show all posts

Friday, November 9, 2012

Community Care Package - Day 9 WEGO National Health Blog Month

Day 9 Nov. 9th WEGO National Health Blog Month
Prompt: Commnity Care Package
 

My prompt is "Community Care Package. Create the perfect care package for your members or fellow patients." I think I just smiled inside because, after all, care packages are my specialty! Just check out my "Hospital Care Packages" page! I've already lived this blog!

A lot of people have (surprisingly) asked me "Mandy, what made you want to make care packages?" and "Mandy, how did you know what to put in the baskets?" I honestly thought it was just a common sense thing. After all, I make them for the Neurology floor at my local hospitals. These floors are filled with children getting EEG's, brain surgeries, and much more. However, I guess it isn't obvious enough? I might need to work on that when I take my next batch out!

In order to explain why I put the things I put in the baskets and what makes me want to make them, I am going to show you through pictures. I made baskets for little kids (babies, toddlers, and children up to 10 years old), baskets for preteens/teens, and baskets for family members.


 
Babies

 
Babies - these were very tricky baskets, because babies are usually "covered" when it comes to being in the hospital. Babies often have everything. It's the parents and guardians who don't. So I sort of "tricked" the baskets and filled it with goodies for the parents and a sweet and simple blanket for the baby. Sometimes even a stuffed animal if I had one. Some of the goodies for the parents that I included were: Drinks, snacks, candies, toiletries, and occasionally gift cards for free burgers and meals at fast food chains (all underneath the blanket).
 
It doesn't seem like much unless you are a parent who has had to go through this. Then you know what it's like just watching your child lay there sick, waiting for another one of the violent seizures to come. Tired, haven't bathed, and have had no time to eat or drink a thing. Half the time you have no cash in pocket to get food. It's terrible.

 
I think what touches me most is the smiles on the faces of the folks who get these bags and baskets. I remember my first time delivering. I was nervous to see other families like me, because it really isn't a happy thing to look at. The sad and angry faces are everywhere. I feared that I wouldn't be let in half of the rooms. I know that when I was in the hospital, if someone tried to come in my room I'd probably yell "GET OUT NOW!"
 
And one day, I delivered all the bags and baskets, and for some reason, I had one fluffy blanket left. It is the blanket on the bottom right side of the above photo. Grey, fluffy, and feels like the softest kitty in the world (minus the smell, allergies, clawing, etc.) Every little child wants one! Unfortunately, it was so small. It is a BABY blanket.
 
I showed the nurse and she said "I know who to give this to," and took me to one of the "emergency rooms" where a mother sat alone crying. I could hardly look inside - her little girl laid unconscious, in a coma, on the hospital bed. Tubes and wires in every area of her body. The nurse said "Stay out here and I will give her the blanket" and walked back out with another nurse. I could see the mother inside crying, holding the blanket.
 
The other nurse who walked out had tears all over her face. She just grabbed me and hugged me saying "It's been a long, hard day. I'm ready to go home". I just let her hug me (even though I didn't know her at all!) because I knew that what she said was true. I don't know if I could ever have her job. Probably not.
 
As we walked down the hallway talking, I tried to dry my EpilepsyBlogger t-shirt off. It was wet on the shoulders with that nurse's tears... Very wet!
 
"Wait!" said a small voice from a woman.
 
I turned around. And I saw that mother from the Emergency room, holding the baby blanket. "I want to tell you something."
 
"Of course," I said. We walked back into her Emergency Room, and I introduced myself. Introducing myself was hard because I already wanted to cry, seeing the broken-hearted mother with tears in her eyes. I let her know that I once stayed in that very hospital several times year, so I was visiting to give back to the place that saved my life many times.
 
"I want to thank you for giving me this," the woman said, crying in between almost each word. "My daughter is in a coma and the doctors say they don't know if she will live because she is so young. I've been praying all day and all night. Praying for a sign... Just something to let me know that she isn't going to be gone from my life. I think this blanket is that sign. So thank you for giving me hope. I know my daughter will love it when she wakes up."
 
How is that for my first-ever non-emergency visit to the hospital? Pretty heavy on the heart. But I'll never forget it.

 
Toddlers & Young Children - The easy baskets! I knew what toddlers wanted. Toddlers and young children get bored easily in the hospital, and with seizures, they need something to take their mind off of the fear and cheer them up. So these baskets are filled with a little more.
 
Above are the Easter drop-off baskets that were given the afternoon before Easter. Inside are eggs filled with candy, coupons for free ice creams, stuffed animal bunnies, puzzles, Gatorade bottles, Goldfish, blankets, lollipops, pretty postcards, sunglasses, coloring books, crayons and much more! Enough to enjoy and even share with their parents!
 
Preteens/ Teens/ Parents and Guardians
 

Preteens/ Teens/ Parents and Guardians - Above are the Easter drop-off baskets for preteens, teens and guardians. Teens and guardians got a really cute re-usable basket they could take home and use for whatever. I also didn't hold back on the junk! Potato chips, sodas (caffeine-free, of course!), boxes of cereal (the good kind), candy-filled eggs, chewing gum, breakfast bars, etc.

The baskets were also filled with things that I personally wish I always have in the hospital when I'm there. This includes deodorant (the good kind), hair soap (the good kind), conditioner (which they don't give at all), lotion (that doesn't smell like baby lotion), tampons (PLEASE!), feminine pads (would it kill any hospital to make them thinner?), shaving cream (this doesn't exist in hospitals), and razors (that don't slice your skin off), etc. Even some little fun things like gift cards, free meal coupons, free RedBox rentals, sleep masks, pretty pill boxes, socks, I.C.E. bracelets, etc.

I was going to put bunnies or more Easter gear, but I thought about it a bit. What would I do if someone gave me all of that? I would say to my mother or father, "Well thanks! Now where's all the stuff that I really need?" My mother would probably say that too! And boy, the smile on the parents faces when they knew they didn't have to take the bus home for money and food was awesome. I got so many hugs it blew my mind!

But I don't do it for myself. I do it because I wish someone had done it for me all those years. That is how I knew what to put in the baskets too! Hope that explains it all for you!




Until next time,
Mandy Krzywonski




(EVERYTHING EPILEPSY!)



(For mothers, fathers, aunts, uncles,
grandmas, grandpas, nieces, nephews, step-fathers, step-mothers,
daughters, sons, step-daughters, step-sons, friends, best friends,
wives, husbands, couples, and so on! Even singles!!!)


(Hopeful words, videos, music, and more to brighten up your day!)


Loved ones of those with Epilepsy also welcomed.
Topics posted each week by Mandy (EpilepsyBlogger).
All ages!

Thursday, November 8, 2012

"Dear Epilepsy" A Letter to the Criminal - Day 8 WEGO National Health Blog Month

Day 8 Nov. 8th WEGO National Health Blog Month
Prompt: Write a letter to your illness.

 


If you enjoy my blogs and articles, please nominate me! Only takes a second! CLICK HERE TO NOMINATE ME!!! #HAAwards #NHBPM

Dear Epilepsy,


I'm truly confused about where to even start with this letter. Honestly, if I met you in person I don't even know what I would say. I probably wouldn't say anything. I would just kill you and get you off of this earth so you can no longer torture or kill anyone. Saying that, I guess this is more like writing a letter to someone who killed you. I can say that I forgive you all I want, but I don't.

Who are you to think that you have the right to crawl into our bodies and take us over the way you do? No one gave you permission - But really, who would? You've taken beautiful memories and either ruined them by embarassing seizures, or stolen them completely through memory loss and brain damage. Now, it's true that no one should be embarassed by you. We didn't ask for you and you do this crap all on your own with no help from us. But people with you can't pretend like we aren't slightly embarrassed sometimes. I'll be the first to admit it.

What makes you think that it's okay to kill? Why do you have to make us live each day worrying about SUDEP or status epilepticus? I hardly ever sleep with a pillow these days in fear that I'll suffocate from one of the tens and twenties of seizures I have in my sleep every night. I go nowhere without my Ativan because I know you'll try to spring status epilepticus on me like you always do.

You didn't make me strong - I made myself strong on my own. You are simply what I stepped on to become who I am today. Therefore, I hate you with everything in me and I will not pretend like I don't. We all hate you, and we're coming for you. Hurting your feelings? Well, I don't care. I hope you feel depressed, insecure, embarrassed, scared and plain angry. Because all of us feel this constantly thanks to you.

You're probably firing up in my head right now, angry that I am writing this letter. I know you well and you seem to hate me most whenever I use a computer. So let me make this easier for you to understand; I am writing this letter simply to tell you to run, and run fast. Why? Because the rest of the world and I are coming to get you and make you a thing of the past. I want my great children to learn about you in school, but I want them to learn about the day you DIED. The day WE KILLED YOU. And that day is coming soon. So enjoy your sick, twisted fun while you still can because I am ripping you out of my head in a month and a half, and the rest of the world is going to banish you completely when we find the right poison.



Screw you,

Mandy Krzywonski


To KILL this criminal, Epilepsy, CLICK HERE AND DONATE TO HELP!!!

Tuesday, November 6, 2012

When Hell Freezes Over. - Day 6 WEGO National Health Blog Month

Day #6 Nov. 6th WEGO National Health Blog Month
Prompt: Write about a time you took the "high road".

If you enjoy my blogs and articles, please nominate me! Only takes a second! CLICK HERE TO NOMINATE ME!!! #HAAwards #NHBPM
 

NOTE: To avoid using curse words, I have used the words "evil witch" in place of... Well, I'm sure it's obvious.
"Girl, you just need to realize that your illness is all in your head. You need to stop feeling sorry for yourself and pretending you are sick with an imaginary disease and just go back to being a human being like me and my son. If you really are sick like you say, you're making yourself sick on your own." says the evil witch.

As the inside of me laughs, thinking of a million words to call this evil witch, I remember that "talking back" or yelling at this evil witch for her rude and pompous speech means that I will only stoop to her unintelligent level. Therefore, I look into the evil witch's eyes, give her a great big smile and say "Have a great day, ma'am." and I walk away with my friends.
 
 
That's right, friends. Hell has frozen over.
 

 
This won't be a long blog. Not tons to say about this situation since I didn't fire back at this evil witch like I wanted to. At a friend's party, speaking with two women there who had Epilepsy. Another woman walks into the area because she overhears us three talking about the side effects we hate, what types of seizures we have, what treatments we use, etc. And this woman feels like she has the right to tell us all that we have a mental illness and that Epilepsy isn't real.
 
My neurons started to fire from all the shock as this evil witch threw insults at the three of us.
 
 
 
 
 
What the hell?
 
How isn't it real?
 
Would it be real if I had a seizure in front of you?
 
Would if be real if your son had Epilepsy?
 
Would it be real if YOU had Epilepsy?
 
Should I get up and tear into you with rude words about your ugly dress?
 
 
When my mind hit the last thought, I realized immediately that I was stooping to this evil witch's level. So I apologized to the good Lord for my terrible thoughts, said something nice, and just walked away with my friends. I took the high road. Avoided a stressful argument that would probably throw me into a seizure. Avoided hurting someone else by making rude comments. But most of all, kept my ground as a respectful young woman in spite of ugly comments. And that alone made me feel good!
 
So, my friends... Take the high road and avoid the crap in life altogether! Evil witches can't hurt you if you just don't care.
 
ALSO - check out the fan pages for tons of cool stuff this month!!! This includes giveaways, cool facts to share with friends, fun Facebook gear to show your advocacy and/or support for others, and much, much more!!! And PLEASE - don't forget to send your awareness month photos to MandyKrzywonski@EpilepsyBlogger.org so you can be on the blog!!!



(EVERYTHING EPILEPSY!)


 
(For mothers, fathers, aunts, uncles,
grandmas, grandpas, nieces, nephews, step-fathers, step-mothers,
daughters, sons, step-daughters, step-sons, friends, best friends,
wives, husbands, couples, and so on! Even singles!!!)

 

(Hopeful words, videos, music, and more to brighten up your day!)

 

Loved ones of those with Epilepsy also welcomed.
Topics posted each week by Mandy (EpilepsyBlogger).
All ages!
 
 
Happy Epilepsy Awareness Month!
EpilepsyBlogger
Mandy Krzywonski

Monday, November 5, 2012

Disaster Planning - Day 5 WEGO Health Blog Month

Day 5 Nov. 5th WEGO National Health Blog Month
BONUS PROMPT: Traveling with Epilepsy


If you enjoy my blogs and articles, please nominate me! Only takes a second! CLICK HERE TO NOMINATE ME!!! #HAAwards #NHBPM

          If you're working while you're at the beach, is it still really a "vacation"? I have always wondered that. One person traveling with Epilepsy requires the effort of many. Whether it's a bus or a plane, a car or a train, a ship or just walking down the street! It's never easy, and it's a 24 hour job. People with Epilepsy rarely get the chance to rest, because it is constant preparing for the next disaster.
          Not to sound negative, or anything... But that's just what we do. We have to.





My boyfriend, Rafael, recently left to A&M University to be in their Air Force ROTC. Since I am awaiting my brain surgery in January, that means I stay here patiently like a dog until he comes home every month or two for the weekend. However, about two months ago, I decided to take my first trip alone to go see him. He goes to school three and a half hours away, so it isn't too far if you drive. Having Epilepsy, you usually don't drive. I don't.

My father and mother are constantly working, and nobody (not even myself) trusts my sister to drive that far on her own. Texas is a state full of crazy drivers, and I don't mind saying it. Therefore, I had to take a Greyhound bus. So much fun! (Hah. Not.) The trip there was 12 hours long, and 8 hours back. How 3 hours and 30 minutes turned into half a day - I can't tell you. Greyhound really needs to figure out their track, though. Anyhow, the trip required delicate planning by my family, myself, and Rafael. Afterall, I would be totally alone for a total of 20 hours in strange cities at odd hours of the morning.

Therefore, this trip - lasting a total of 5 days - would take quite a bit of planning. Being a person with Epilepsy means you must be ready for anything and everything to go wrong...


What if I accidentally leave my medication at home?

What if I forget to take my medicine on time?

The bus stops twice, so that means I'll be awake all night - won't that much lack of sleep give me a seizure?

Who will I call if I need to go home early?

What if my cell phone dies while I am on the bus?

Mum and dad will worry themselves to death if I don't call every few hours...

Who do I know that could come get me if an emergency happens?

What will I do if I feel like I might have a seizure on the bus?

Who will take care of me if I have a seizure on the bus?

What if I end up in the hospital?


These are the types of worries and thoughts that run through your head as the person traveling with Epilepsy... But I assure you, these aren't even slightly near half of the worries you'd have. To somewhat calm these worries I have made a checklist of things to do and carry when I travel.

1. Research the area extra carefully - Look around online at your destination, and your stops along the way. What are the local hospitals? Where can you order your medication if you accidentally forgot it at home? The list of hospitals is good for me because I can get a good idea of where I'll be in case of an emergency. I usually copy and paste the addresses/numbers/website into a document on my mother's laptop so that she can look for it in case of an emergency and know were to find me. It's much faster than having to look up the destination after hearing where I am from some busy nurse in the ER. I use CVS Pharmacy, so I call ahead of time and ask if I can transfer prescriptions in case of an emergency. Some locations do not allow a transfer, which is why I call ahead.

2. Book your hotels accordingly - Don't spend too much on a room because you need extra cash in case of an emergency. This goes for all types of emergencies. Maybe you need to run to the drug store for some Pepto-Bismol, or maybe you forgot your Ativan and need to transfer your prescription to another pharmacy and pay for it. A friend of mine has a son and daughter with Epilepsy and always books hotels near hospitals to avoid any sort of delay in case of a seizure emergency. So that is another thing some may wish to keep in mind.

3. Prepare your wallet - Never travel unless you have more than enough cash. "Just enough" is not enough simply because things change, and things go wrong. That's what this article is about, right? Make sure you have insurance cards, credit cards, personal identification, and any other type of card/ID you may need with you. One of my most important rules is to ALWAYS, always, always carry a $20 bill (or more, that's fine) that you save specifically for emergencies. This way, if you forget or lose your credit card, run out of money, need some Tylenol from the store, or need to make an emergency phone call, you're covered! This special $20 bill has saved me at least 5 times in my life, and it is one of my most important travel rules.

4. Set reminders - When traveling alone or with family, I always set reminders on my cell phone and iPad (both) three times a day to remind me to take my medication. This last trip was off-the-clock (at odd hours of the morning) so 5:00pm felt more like 10:00pm, and 6:00am felt more like noon. Setting the alarms helped my body stay on track with medication, and kept my mind sharp for what time it really was. Missing doses of medication can cause seizures within a three hour window for me.

5. Medication checklist - I always make sure I have every medication with me when I travel. Even if it's one that I only use "sometimes" such as a pain killer or Ativan (emergency anticonvulsant). Since you always seem to need things when you don't have it, it's better to bring it along. As I mention in many of my blogs, I have Status Epilepticus during my Tonic-clonic seizures, and Ativan is absolutely necessary for every single Tonic-clonic to avoid death. So it is always on me! In my purse, pocket, luggage, family car, and at home! Also make sure that you have enough medication to last you a week more than you need. Layovers, broken tires, storms, etc. happen and you need to be prepared for your trip to last longer than you think.

6. Setting up an emergency plan - There must always be an emergency plan, especially when you travel alone. You want to talk to your family or loved ones and discuss what they will do if a seizure strikes (or some other emergency), how you will get back home, etc. Some good things to keep in mind are:

- Who will come to get you in case of an emergency? Make sure that person lets their boss know they may possibly need to leave if something happens.

- Make sure that your family knows your entire route. Where are all of your stops? What bus/plan/ship/etc. are you taking? What is your destination? Where is your hotel? What room are you staying in? What time are all of your stops and when do you leave? Have all of this written down before you leave anywhere.

- Update loved ones regularly. If you had a change of plans due to a layover, text your family and let them know you're stuck at the airport overnight.

- Medical Alert Gear is a must with Epilepsy. I prefer either ScanMed QR or Mediband Plus. Two wonderful companies with gear that can ensure you get correct treatment. When you have Epilepsy, it is always best to carry something that lets people know you have Epilepsy right away. Whether it's card around your neck that says "This person has Epilepsy" or a medical bracelet with "EPILEPSY" in bright red, bring it with you!

7. If you're sick, the trip is off .- When you have a cold you are more likely to have seizures too. The worst mistakes I have ever made involved going on vacation when I had what I thought to be a "tiny cold". The idiot teenager inside of me said "It's spring break! You'll get over it in a day or two!" It ended up with me vomiting in the hotel room and having seizures the whole trip. If you're sick, tell your aunt and uncle to make the bed in the guest room because you won't be accompanying mama and papa this time!

8. Make sure you have opportunity to rest. If you've been up all night, plan to sleep 6 hours when you arrive to your destination. You must, must, must make up for all lost sleep or your seizures will take you over when you least expect it.

9. Leave no loose ends. Start planning early (this means NO last minute vacations with the girls!!!) and plan well! Unless the trip is planned out from start to finish, it's probably not a good idea. If you think "Hmmm... Not really sure if I'll have cash for day #3, but I can figure that out later right?" then that should be a BIG RED FLAG that you need to just say no and stay home, or figure out a better way to spend.

10. Teach others around you what to do in case you have a seizure. This means strangers, too. Better make friends with that weird guy sitting next to you on the plane, because he might end up saving your life! Introduce yourself, shake their hands and let them know you have Epilepsy. Sometimes it's easier to type up a list of what to do, print it out, and hand it to them when you meet them.

11. Avoid being alone as much as possible... Especially in a strange place. You don't know how dangerous it is to have a seizure on your own until you've seen a man being robbed as he convulses on the ground at a bus station.

12. Keep identification and medication on you at all time. If you're a girl, make sure you have everything in your bag and take it everywhere with you. If you're a guy, it's harder since you don't carry purses. However, backbacks work just fine! It may be a tight situation where you can't have a bag at all times. If that's the case, get a miniature pill container and put about two doses of each of your medications inside and/or your emergency seizure medication (Ativan, Lorazepam, etc.) and don't forget your wallet!!! This way people know who you are if they find you having a seizure or unable to speak.

That's not the entire list of things I have to do when traveling, but those are some of the most important steps I must remember to take. It's never easy to travel with Epilepsy. However, after you have done it a few times you learn to deal the same way I have. You can still have fun and enjoy yourself, you just have to prepare for anything at all times. That's why I say "Disaster Planning," instead of "vacation planning"!

Sounds about right, eh?


ALSO - check out the fan pages for tons of cool stuff this month!!! This includes giveaways, cool facts to share with friends, fun Facebook gear to show your advocacy and/or support for others, and much, much more!!! And PLEASE - don't forget to send your awareness month photos to MandyKrzywonski@EpilepsyBlogger.org so you can be on the blog!!!


 
(EVERYTHING EPILEPSY!)


(For mothers, fathers, aunts, uncles,
grandmas, grandpas, nieces, nephews, step-fathers, step-mothers,
daughters, sons, step-daughters, step-sons, friends, best friends,
wives, husbands, couples, and so on! Even singles!!!)

(Hopeful words, videos, music, and more to brighten up your day!)


Loved ones of those with Epilepsy also welcomed.
Topics posted each week by Mandy (EpilepsyBlogger).
All ages!

God bless,
Mandy Krzywonski
(EpilepsyBlogger)

Sunday, November 4, 2012

What's in Mandy's Purse? - Day #4 WEGO National Health Blog Month

Day #4 Nov. 4th - WEGO National Health Blog Month
"Write about what's in your bag/ pure/ backpack every day."

If you enjoy my blogs and articles, please nominate me! Only takes a second! CLICK HERE TO NOMINATE ME!!! #HAAwards #NHBPM
 
 
          My purse is like my third arm - it goes everywhere I go, and it does so many things for me that I'd never be able to do with only my two arms. If I ever forgot my purse (Which I haven't done yet! Cross your fingers!) I would be in so much trouble. Why? Well, it's simple. It holds my entire life inside! I don't think there's any sort of everyday problem that my purse cannot help me solve, and that is why it is always by my side.

          It isn't fancy like my mother's purse, or some of the other purses I have owned previously. It's a simply faux leather bag that costs about $80 at Macy's. It has one pocket in the front where I throw any receipts, business cards, notes, or just "junk" that comes about throughout my day. I probably empty that pocket once every month because it tends to get pretty full. But inside is where my purse gets fun!
 
 


 
Here's what my purse looks like inside on a Sunday. Sunday is my clean-out-your-purse-and-organize-it-day! If you're a woman, you know just as well as I do that you tend to literally throw trash in your purse if there's nowhere else nearby to stick it. I don't throw nasty trash in there, but I'll throw an empty water bottle, paper bag from the bakery, a receipt after I have gone shopping, or something alone those lines inside. But those things can really build up since I don't have that world of energy when I get home to empty it out.
 
After saying that much, this is what my purse looks like after it has just been cleaned out and re-organized. Not extremely clean, even still - but hey, it works, right? Inside is everything I need to get by during my average day. The insides of my purse change from time-to-time. Especially from season-to-season, actually. So it may be better to say that this is what I need on an average fall day.
 
 
NOTE: Since I am shooting photos with my iPad, the purple iPad cover will represent my iPad!
 
1. My iPad - A gift given to me by my mother for my last birthday. At first I somewhat rolled my eyes at the iPad. But after getting one, I hardly use a laptop or any other device! This is where I update my fan pages, my blog (occasionally), text friends (when my cell phone has died), take photos and edit them, track my food intake for the day, and much more! Most importantly, my iPad contains apps that have info on my health in case I have a seizure or an emergency while I am out during the day.
 
2. A few pens - You always have to have a few pens. I can't tell you how many darn times I have needed a pen and couldn't find one anywhere. Therefore, since about 6 months ago, pens are always in my purse! I always grab one when they are complimentary too. Such as at a hotel, doctor's office, or a store. I am not always 100% sure they were meant to be "complimentary," though...
 
3. My crappy Palm Pre Plus cell phone - I HATE this phone with all my heart, but it's the only one I have at the moment to communicate so it goes everywhere with me. With or without the purse. If I feel a seizure coming on I attempt to dial my father as fast as possible, which is my most important reason for having this with at all times.
 
4. Chargers - Since my stupid cell phone dies every 45 minutes, the charger is forced to be included in my purse. I have had to charge this phone in the hospital, doctor's office, friend's house, bus station, and many other places! I bring my iPad charger too, even though it stays charged for days on its own. Occasionally I run it down and forget to charge it at home before I leave somewhere.
 
 
5. AED's - I am currently on Felbatol and Trileptal, and I have to keep them in my purse so that if I forget to take them in the morning, they are always with me. I have had terrible memory problems when it comes to taking my medication lately. Absolutely awful... and I never remember until I am halfway across town!
 
6. Pain killers - I don't usually take pain killers, but I prefer to keep them on me just in case a migraine comes about. When I get migraines they are very severe. Sometimes I can get away with just going to sleep. But most times I am naustead, dizzy, and in so much pain that I can't move. That's when I need some good ol' pain killers.
 
7. Ativan - My life-saving drug. I have what is known as Status Epilepticus, which are seizures lasting more than 5 minutes. These seizures can cause death, so I have been directed to take Ativan if a Tonic-Clonic seizure comes about in order to avoid this happening. It is always on me since seizures can happen anywhere and any time.
 
 
8. My as-seen-on-TV Aluminum Wallet - Yes, it looks beat up. Why? Because my boyfriend, Rafael, reminded me that the commercial for this product claimed that you could run this product over with a vehicle without damaging it. So, being the guy that he is, he insisted we tried it. Turns out the commercial was totally honest! We ran it over twice and it still works like a charm. I love this product because I can fit cash, stamps, receipts, and all my cards inside. I am pretty lazy because I have yet to remove debit cards from high school (finally did that today!) but at least it all fits!
 
9. Debit card(s)
 
10. ID card
 
11. Store reward cards
 
 
12. Fit Me™ Foundation - I use both the liquid and the powder foundation for the "porcelain-look" that isn't entirely popular anymore. I have sensitive skin and these Maybelline products seem to be the only ones that don't make my face break out or itch! It has no oils or waxes and is non-comodogenic and dermatologist-tested. Feels like nothing is there and that's what I think I love the most!
 
13. Brushes! - Gotta have 'em! I used to apply foundation with sponges or even my hands - but I have found that brushes are absolutely necessary both for reduction in acne (thanks, Epilepsy) and for a more "clear-skinned" look. I use the smaller brush for eyeshadow, which I only really use when I am going out. I don't really ever take eyeshadow with me so I did not include it in this article.
 
 
14. NYX Eyebrow Cake Powder - NYX Eyebrow Cake Powder has been a must for me for years. Whilst taking my Anti-epileptic drugs my hair has thinned, and that counts for all of my hair - eyebrows too, unfortunately. This product is wonderful because it not only includes a slanted brow brush and a round wand, but it also comes with a wax to help keep the powder on all day and two shades of cake powder to have both day and night shades.
 
15. NYX Super Skinny Eye Marker - I LOVE this stuff! Regular eye liner fades off throughout the day, smears as you blink, or runs if your eye waters from allergies. This product stays and looks beautiful. I prefer the Jet Black over the other shades because it contrasts my eyes very well. Definitely always in my purse!
 
16. Volum' Express® The Falsies™ Washable Mascara - Many women like waterproof mascara, but I hate it. I always seem to mess it up as I apply it thanks to my shaky hands. This product goes on smooth and the applicator makes it fool-proof. Since it is washable I reapply it halfway through the day. But I don't always wear it right away, therefore it goes in my purse to apply when I decide to wear it.
 
 
17. Bella Il Fiore Rescue Me Peppermint Lip Treatment and Sugar Kisses Peppermint Lip Scrub - I got these two tubs of lip products as a gift from a good friend last fall and I seriously have yet to make a dent in both tubs. I probably won't be out of this amazing stuff for two more years! I have always had easily-chapped lips so I take this two products everywhere to keep my lips soft and kissable! Definitely worth a try!!!
 
18. Dream Bouncy Blush™ - Every blush I have tried has either been too dark or has made me get a rash - or both! I have used many brands, ranging in price from $4 - $30 and this beats them all! It gives just the right amount of color and you don't need much to get you through the day. I probably won't run out of this product for a year or so. I only wear it in the evenings so I keep it in my purse in case I am out and about.
 
19. Revlon Just Bitten Kissable Lip Stain - I LOVE this stuff! Better than lip stick or lip gloss, and gives amazing color! It goes everywhere with me because I never know which color I want to apply. But these are the two that I use!
 
 
20. Lotion - I always have lotion on me. Not necessarily the one above, but this is the lotion I have had for the last three months so I included it. I just like to keep something to moisturize my hands, arms, legs, or feet throughout the day. I get dry skin sometimes and I have to take care of it ASAP when it happens! My hands are probably the worst! The lotion above is the Dark Kiss body lotion from Bath & Body Works.
 
21. AXE - This is where all the boys go "What?!". Yes, I use AXE. It is the only deodorant that I have ever used that does not give me infections, rashes, etc. and the only deodorant that I can truly say works all day long. Now, I am the kind of gal that forgets to put it on right after I shower. So I keep it in my purse just in case!
 
22. Clean & Clear Advantage Spot Treatment Gel - Being on Felbatol means that zits come whenever they please, and they come fast. You wouldn't believe how fast my poor face can go from entirely clear of acne, to full of pimples in just an hour! This stuff kills the pimples on the spot, so it is another one of my best friends!
 
23. Young Living Peppermint Essential Oil - I talk about this stuff a lot in my other blogs. Young Living is by far the best essential oil company around, and it has no other ingredients except for the oil itself. I like that! I use this when I have migranes, before I even pull out the pain killers. It usually kills them on the spot. Now, there are migraines who insist on ruining my life in spite of peppermint oil, so that is why I still keep pain killers around just in case.
 
 
 
 

ALSO - check out the fan pages for tons of cool stuff this month!!! This includes giveaways, cool facts to share with friends, fun Facebook gear to show your advocacy and/or support for others, and much, much more!!! And PLEASE - don't forget to send your awareness month photos to MandyKrzywonski@EpilepsyBlogger.org so you can be on the blog!!!


(EVERYTHING EPILEPSY!)


(For mothers, fathers, aunts, uncles,
grandmas, grandpas, nieces, nephews, step-fathers, step-mothers,
daughters, sons, step-daughters, step-sons, friends, best friends,
wives, husbands, couples, and so on! Even singles!!!)

(Hopeful words, videos, music, and more to brighten up your day!)

Loved ones of those with Epilepsy also welcomed.
Topics posted each week by Mandy (EpilepsyBlogger).
All ages!

God bless,
Mandy Krzywonski
(EpilepsyBlogger)

Thursday, November 1, 2012

It Heals - Day #1 WEGO National Health Blog Month

WEGO National Health Blog Month
Day #1 Nov. 1 - Why I Write About My Health

If you enjoy my blogs and articles, please nominate me! Only takes a second! CLICK HERE TO NOMINATE ME!!! #HAAwards #NHBPM


Heart
[hahrt]
noun

Definition: Something that many doctors - including their so-called answers - often lack.

"Mandy, why do you write about your health?"

"Good question," I think, as I rub my stomach. Tonight was Halloween and I indulged a little too much on candies. Put my body into shock after the last two months of strict dieting. I don't think my body knew what to do as it was re-introduced to Snickers bars and just went into full-on shock.





Back to the topic (I tend to lose track easily - sorry!). Well, back when I was struggling to find answers, I truly wished that someone out there was a blogger like myself. I searched the internet daily for a girl out there somewhere (anywhere) my age, going through the same things, who wrote blogs that had answers... But mostly blogs that had heart. Sadly, I didn't come across one that had the heart I was looking for. Yes, I found several. And don't get me wrong - they were fantastic. But I found no blogs that spoke to the younger crowd just as well as the older crowd. After all, I was only 16 when I was diagnosed.

When I write, I write about things that I know others probably want to hear. Epilepsy is a disorder (part of me wonders if it should just be called a disease - it definitely feels like one. Does anyone else wonder if people would take Epilepsy more seriously if it was called a disease?) that currently has NO cure. There are so many types of Epilepsy, seizures, and syndromes involved with Epilepsy that our world needs hundreds of cures. Just as a child goes door-to-door on a mission to fill their pillowcase with as many candies as possible, we are searching for as many cures as we can get our hands on. But we are also on the lookout for answers, and often our answers are as simple as "I understand - that happens to me too".

Have you ever noticed how a child will cry until their mother kisses their "boo-boo"? (Even if it is an invisible one, or doesn't truly hurt at all) And when their mommy finally kisses this "boo-boo", th child suddenly stops crying with only one kiss. What this tells me is that stress can be relieved when you have another person to confide in, or a person to comfort you in your time of need. Unfortunately, I cannot be there for every single person who reads my blog posts individually and personally, but I hope to reach as many people as possible and offer some sort of comfort when they read my articles. The kind of comfort and support that makes someone yell "Honey, come read this! This girl has the same problem you do!".

Truthfully, I am still looking for answers myself. I am still struggling with seizures every single day of my life. I never found that magic pill, or outgrew my Epilepsy. I still look to the sky every now and then and ask God "How much longer do I have to go on living this way?"  I still pound my fist against the table when I missed out on a great night with friends because they were out too late, or had to skip out on the haunted house today because of the strobe lights. I am scheduled for brain surgery in January - only two months away... About 60 days. I am scared out of my mind, just like every other person suffering with seizures. Therefore, blogging offers a stress-relieving benefit to me as well.

This is why I also encourage many others to be their own advocate and talk about Epilepsy. Not only can you help others by educating the world and getting the word out - but you can also improve your quality of life by relieving your stress of feeling alone. You can connect with others just like yourself all around the globe, and even in your own area. You can learn new things, talk about your personal issues, learn how others cope, and help others cope. God gave us brains and mouths for a reason, right? (And fingers... to type!!!)

Every time a fan sends me mail, comments on one of the Facebook fan pages, or leaves a comment on a blog, I feel less alone. I know that there's just ONE more person who is feeling how I feel. I become less alone every few hours as these comments and messages come in. And boy - the pictures! Seeing the faces of others who feel the way I do is even better. Not to mention that I can see the faces of those who I have helped.

I'm probably going on forever, so I will give you a short answer that hopefully sums it all up:

It heals.

It heals my hurt to talk about my struggles. It heals those who feel alone. It heals those in need of answers. It heals those who feel mistreated.

I blog to empower, uplift, and help others overcome the hole that Epilepsy can't seem to stop digging for our community. And although many of us have not found our cure for the seizures, we can find the cure for our broken hearts and minds. Blogging is my form of helping myself and others heal.
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Happy November, my loves!!! Epilepsy Awareness Month is finally here - so wear your purple and remember you can NEVER wear enough of it! Nail polish, t-shirts, pants, socks, and even hair dye! Let's make a difference!!!

ALSO - check out the fan pages for tons of cool stuff this month!!! This includes giveaways, cool facts to share with friends, fun Facebook gear to show your advocacy and/or support for others, and much, much more!!!


 
(EVERYTHING EPILEPSY!)


(For mothers, fathers, aunts, uncles,
grandmas, grandpas, nieces, nephews, step-fathers, step-mothers,
daughters, sons, step-daughters, step-sons, friends, best friends,
wives, husbands, couples, and so on! Even singles!!!)
 

(Hopeful words, videos, music, and more to brighten up your day!)
 
 
Loved ones of those with Epilepsy also welcomed.
Topics posted each week by Mandy (EpilepsyBlogger).
All ages!

God bless,
Mandy Krzywonski
(EpilepsyBlogger)

Monday, February 6, 2012

Interview with Eric Miller, founder of Candlelight Concert for Epilepsy Awareness


By: Eric Miller 

Hello Eric! I’m so glad to have you for such a special interview.    
Thank you Mandy. And thank you for all the work you do in terms of blogging, Facebooking and raising awareness. It’s truly wonderful and inspirational.

Thank you, Eric. That means a lot to me. So I understand that your wife, Carolina, passed away in August due to SUDEP. How have you been coping? What have you been doing since then?   

Tuesday, November 1, 2011

My International Prayer for Epilepsy



Tiffany Kairos's International Prayer for Epilepsy on Facebook
http://www.facebook.com/internationalprayerforepilepsy
Here is my prayer, for the International Prayer for Epilepsy. Please bow your heads and join me in prayer, and let's prepare ourselves for a successful Epilepsy Awareness Month of 2011.