First Post, New Year!!

Hello My darlings! I know I’ve broken my promise about updating more often, and I’m sorry! Though I have good news! I’ve been busy working with my financial aid office at my school to get my financial aid back. I was on academic probation, and thanks to a dis-compassionate professor I lost my financial aid last fall. Luckily I was able to get it back, after contacting the Disability Services and working with them to document my illness and get a Memorandum of Accommodations. Once that was turned into financial aid, I was approved right away! I’m so happy I can finally continue with my education! Eventually I’ll have my Masters, or even PhD!

So.. what else have I been doing?? Well, I baked bread, yes home made bread! I was my first time, and I was nervous but excited. I used my wonderful Kitchen Aide mixer and let it do all the hard work! I do have to say for a first try it turned out alright! I need a bigger pan, and to cook it slightly longer, but it was delicious!

Home Made Bread
Home Made Bread

We also went to the park and launched my son’s bottle rocket! I know, what was I thinking?! Not to worry it was a little rocket powered by vinegar and baking soda! My dad was a big help, seeing as how I can’t really pour anything into a small little bottle, so he did it! I sat down and watched my son run around after the rocket and laugh! It was a very happy time for me! I’m not able to get out much, but it wasn’t a sunny day, or very hot, so I was able to get out, and enjoy the day with them!!

Mathew and His Rocket
Mathew and His Rocket

 

Mathew and Grandpa
Mathew and Grandpa

 

After that we got a bout of chilly weather, which just made things horrible with my pain, and I couldn’t regulate my body temperature! I went from freezing to burning up! Seizures a few times a day, it was just awful!  So I ended up staying wrapped up in my jammies and Dysautonomia hoodie, and laying on my couch with my puppy!!

Me and Lillie Belle
Me and Lillie Belle

I’ve had falls, quite a few, and one really bad one, to where i’m not so sure I didn’t break a rib! Such is life for me! I’ve got my health insurance finally straightened out! I’m working on being happy and working on my book! I’ve also developed huge problems with eating. I’ve been unable to eat more than a few bites for two days now. I have only been able to drink about 2-3 oz of my meal replacement drinks too. So.. I’m starting to worry about it a little. I’m so hungry, and thirsty, but every time I eat I get so nauseous, and the pain is horrible, and no it’s not gas! LOL.  So I’m guessing it’s time to see a GI! Oh the joys of Dysautonomia!!

My Meals!
My Meals!

 

 

That’s it for now my dear darling readers!!! Until next time, I bid you a wonderful day!!

Well Done My Friend!
Well Done My Friend!

 

End of the Year Review..

NYeve 2013

Hello my dear readers!! Tonight is New Years Eve. I’m home, ready for bed. LOL. It’s been a rough few days, this is not how I wanted to end the year. All I can say is, at least I haven’t landed in the hospital!

My goal for the upcoming year is to work on getting answers for my health, or as many answers as I can. I see my new neurologist next week, and I’m excited, yet nervous! I’m hoping things go well with him. I’m also working with University of Miami Neurosurgery Department to get an appointment with Dr. Green. They’ve been so helpful.  I also hope to get a wheelchair. 🙂 And make it special, and just for me. I’m nearly completely unable to bear weight on my left leg due to the pain in my hip. I also have some silly goals I’ve set aside for myself:

 1) Get the cooling bed so I can sleep!

2) Start crossing things off my bucket list, first is to experience the Northern Lights up close and personal.

3) Get special contact lens for my photophobia.

4) See my son graduate VPK (in May)

5) Write a book.

6) Make new and long lasting friendships.

These are just a few of mine! What about you?? Have you decided any resolutions for yourself??? This year has been very difficult, and at times i’ve wanted to give up, but I kept on fighting. Just as I will next year! Sometimes our trials seem so much, too much at times to handle, but we must remember, that we can overcome so much with our family and friends at our side.  I want to help others as much as I can. To help others see that even though we battle this hell, we don’t have to let it consume us, we don’t have to let the darkness win. Let’s start this new year off right. With positive thoughts, and hope in our hearts! Hope for so many things, and people. Remember we are all battling something, who are we to judge others?? All we can do is be kind to one another, show compassion, and hope that our kindness helps someone else.

So my dear readers, as I mentioned in the last post, I’d truly like to make this more interactive. I’m working on making this an active site, and hopefully I can have that done!

Stay safe my dear readers, and Happy NEW Year!!!!!!!!

Holidays..and the stress it brings

keep-calm-it-s-christmas-eve-9

So… it’s Christmas Eve…FINALLY!!!! I spent Sunday making Sugar cookies with my son. I was exhausted by the time we were done, but to see the smile on his face was well worth it! I sat in my walker and wheeled myself around the kitchen. We even made homemade frosting! Now..I’m not a great baker..I rarely bake..but these turned out pretty well!!! Though, I didn’t say they’re pretty..lol.

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The stress of Christmas shopping, wrapping the presents, dealing with family and then the cooking.. So much goes into it. Which in turn makes me feel worse health wise. Though I wouldn’t trade it for anything. Seeing the smile on my son’s face is all worth it.  I’m falling a lot more, dizziness is worse. Had a really bad fall last night, I’m trying to recover from.

I’m trying to teach my son that Christmas is not all about presents, that it’s about family, faith, love. I remember as a kid, my dad got laid off from work just before Christmas. We lived in West Virginia, so it was wintertime. Imagine, December in the mountains. We had a choice, presents or food and firewood. My parents chose to put food on the table and keep us warm. On Christmas morning a knock came on the door, it was our neighbors, members from our church. They had a ham, casseroles, bags of presents, firewood. To me, that was still to this day the best Christmas I’ve ever had. It was the embodiment of what Christmas is. Family, Community coming together and celebrating our Faith, our love for one another, helping each other.  If we did more things like that just for one person, it could mean the world to them. It makes a difference. The world needs more of that, in my opinion. More Faith, more compassion, more love. 

Yes I have something incurable, yes it’s taken so much from me, but it hasn’t taken my faith, or my strength, or my love, or my hope. These are all things that we should hold on to. Even if I do have a brain tumor, I’ll still fight. Because fighting is worth it, I have so much to live for.  People often assume acceptance means giving up, to me it’s not the same. I’ve accepted this life, but in no way have I given up. My eyesight deteriorates, my hearing is going, my legs barely function, but I still fight. I’ve accepted this is my path, but I’ll fight like hell to live. I can still live while being in a wheelchair. I can be a mom, a wife, a daughter while in a wheelchair.  Acceptance is not about giving up, it’s about letting go of the anger of why me, why this, and accepting life as it now is, and embracing it, and using your strengths in a positive way.  We have to accept that our family will never fully understand what we go through, that no one will except those that suffer the same illness. Accept that they will never understand, let go of the anger, of the guilt, and be at peace. All you can do is express yourself to them, and educate them. My family doesn’t understand, but not understanding, doesn’t mean they can’t be supportive!!!

Christmas is about family, Faith, love. Take a moment this Christmas to let your family know how much their love and support have meant to you. For me, it’s meant the world.

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