Sunday, May 12, 2013

For My Mom...

HAPPY MOTHER'S DAY! A mother's work is never done, not even on mother's day, but I hope you all at least get to kick up for feet for a little while today! I've been living in Las Vegas for 5 years so that's 5 mother's days that I'm not able to be with my mom since she lives in Chicago. I want to dedicate this mother's day post to her not only because she is my rock and the best mom ever, but because I want to help spread awareness about her disease, myasthenia gravis (MG). She was diagnosed with this autoimmune disease a little over a year ago, and although she's taking medication to sustain her illness, it's still hard to watch her go through it. Myasthenia gravis affects her voluntary skeletal muscles and so far it has impacted her breathing, her energy and has caused her eyelids to droop from time to time. Many people don't understand how she can be sick because she still goes through her day to day life perfectly fine but inside they don't realize that she's hurting. She takes 14 different pills to ease the symptoms of her disease, but they cause new symptoms like headaches and nausea. There is no cure for myasthenia gravis, but hopefully in the near future we can find one or at least find better treatment options. Many doctors don't know much about the disease unless they specialize in it and most often people with MG initially get diagnosed with other "invisible illnesses" instead. I remember briefly talking about MG in some of my nursing classes, but before my mom had it I know I never even heard of it.


That's where I come in. People don't realize that myasthenia gravis  affects people of any race, age, or gender. Dogs are even known to have it. In the U.S. it happens to 1 out of every 5,000 people. I watched my mom get poked, prodded, and tested to figure out why she was having breathing issues or why she was always so tired or why she woke up one morning with her right eye drooping. I hear her phone calls of the pain that she's in or hear her gag as she downs all 14 of her pills (If I take more than two advil I want to puke). I then watch her on video chat slowly shut down as the steroids in her meds give her a headache or make her feel dizzy or nauseous. It's never ending. It also doesn't help that people with MG are recommended to rest and not stress because it intensifies their MG symptoms otherwise. My mom's a caregiver for an Alzheimer's patient so she works long hours every week, sometimes even working overnight. Life in general can be stressful, and how can anyone living with a disease like this not stress? 

Through it all, my mom still moves forward. She takes care of my little sister and I even though we're both grown and living out of the house. She goes to work and is a great caregiver to her patients. Her friends don't stop raving about her, and even though my family can't always see eye to eye, my mom reminds us that family always comes first. She does so much for us, but I didn't know what I could do for her for once. I think the lowest point for me through all of this was when my mom got so weak that she ended up in the hospital and had to do some intense treatment to ease her symptoms of myasthenia gravis. Most people didn't even know that she was suffering for so long, but they all kept flocking in with support once they found on. I, being a full-time college student, unfortunately couldn't be there physically. I know that she said it was ok and I was able to video chat with her during her stay, but I still felt bad that I couldn't be there. To stay overnight with her while my stepdad had to go to work, or to just sit there and chat with her through the day so she wouldn't be alone or for support when no one else understood what she was going through.
So, I did my research and I found out that there was a myasthenia gravis walk! They had one here in Las Vegas, but I only found out about it a day or two before the event. Luckily I saw that they have a walk in IL coming up so I had to sign up. I formed Team Hawingirl to help the Myasthenia Gravis Foundation of America (MFGA) raise money that will go towards finding a cure for myasthenia gravis, help find better treatment options, and give support for people like my mom who suffer from MG. I also dedicated this time period to help raise awareness about the disease and educate people about how they can help. From time to time you will see posts about our MG Walk team and the progression of my mom's health. I know that this might not be much, but I'll keep working at this until we can find a way to help my mom feel better. If you would like to learn more about myasthenia gravis, my mom's personal story, or would like to donate to our team, you can visit Team Hawinegirl's page. There you will also find my personal walk page as well as JAM's walk page. It's an all-age event so JAM wanted to do his part too for grandma!

I'm working on various ways to find ways to fundraise for our team, but two lovely ladies from Tupperware and Scentsy & Velata have already stepped up to the plate! If you purchase through Team Hawinegirl's parties online, a portion of your profits will be donated to our walk team! There are two parties for tupperware that you can shop from, the fundraising team party and my personal e-party. Both parties offer different buying choices, but regardless of which party you shop from portions of your purchase will go towards our great cause. Every form of donation is greatly appreciated, but at the very least I would love whoever joins me in spreading awareness about my mom's disease. She means the world to me and I don't know what I'd do without her.

Mom, we may not always seem eye to eye but I know that no matter what you'll always be there for me. People started dropping like flies when I had JAM at a young age and even though you weren't too happy about it either, you supported me through it all and for that, I'm forever grateful. No matter how old I get, I realized you're never to old to ask your mom questions or for help. You sacrifice so much for us and will always give us "your last $20" (inside joke). I only get a glimpse of what you go through on a day to day basis with this illness, but you still go through the paces with a smile on your face and never let this illness bring you down. I can't wait to do this MG walk with you and walk proudly with you. You may think that people look at you crazy and you may feel a little insecure when your eye droops or other symptoms occur due to your sickness, but you're still my beautiful, "unique" mom. I know I can't be with you physically on mother's day but I hope that you get to rest a little bit and enjoy YOUR day today. You work too hard! RELAX! It's ok! I love you with all my heart and I'll see you when you come visit this summer! Happy mother's day mom! I don't know what I'd do without you ❤.


I'm not sure who this poem is by, but I think this sums everything up. 

Thank you for always being there
and knowing just what to do
Thank you for knowing the words to say
when I'm feeling way beyond blue 
Thank you for patiently listening
to all my worries and stresses
Thank you for caring enough
to get me out of all my messes 
Thank you for being a phone call away
or around the corner to run to
Thank you for your door always being open
and knowing just what to do 
Thank you for being my constant support
when i didn't think I could cope
Thank you for lifing my spirits
and letting me know there IS hope 
Thank you for being the best parent
a daughter could ever wish for
I love you with all my heart
today and forever more.