Tuesday, June 5, 2012

Energy for Life Walk 2012

It's that time again!!!  Time for the Energy for Life Walkathon to raise awareness of Mitochondrial Disease and raise money for research for a cure!

This year I am one of 2 co-chairs planning and organizing the walk.  No pressure or anything.

Last year I was under the understanding that the team and the individual that raised the most money would be recognized in some way.  Evidently I was wrong.  BUT since I am helping plan the walk this year, there WILL be recognition of the team and the individual who raises the most money.

Sooooo.... I need your help!!!  Last year was a huge success.  But we can do so much better!

This year I have 2 goals...
1. To raise more money as a team and as an individual than I did last year.
2. To raise the most money as a team and as an individual than anyone else participating in the walk.

Can you help???

If you would like to join Team Mito*GONE*Driacs and walk with us or be a virtual "walker", please click on the link below and sign up.  Then, start getting those pledges!!!  It's never too early to start fundraising.
Team page for the Mito*Gone*Driacs

If you would like to donate, please click the bottom of the picture below where it says "click here to donate".

You can also start your own team by going to the main KC walk page here and clicking "Register" on the left side of the screen.

If you would like to volunteer for the walk and either help with planning or running the walk the day of, please email us at EnergyforLifeWalkKC@gmail.com

I will be updating with more information as the walk gets closer.


Click Here to Donate

Sunday, June 3, 2012

Hobbies, businesses, and other fun things to keep me busy

Over the course of the last two years I have had to find things to do to keep me busy.  At first I kept very busy playing computer games on facebook - farmville, mafia wars, frontierville, and whatever other "ville"s I could find.  Of course, at that time I found no need to find permanent hobbies or other things to keep me busy from the couch or bed because as far as I was concerned, I was going to get better.  It was just a temporary situation.

As time went on and I was not getting better, I was getting worse, as well as receiving the diagnosis of an incurable and untreatable disease, I knew I needed to find other things to do to keep myself busy.  Facebook games were just not cutting it anymore.  I needed a hobby... or ten.  Well, I have done just that.

In fact, I have decided to turn a couple of my hobbies into businesses.  Whether or not they will be successful is a different story.  Successful has a different meaning in this instance, though.  I would just like to have enough business to support my hobby, not enough to make a living (although that would be nice).

The first hobby/business I have started is making hair bows.  I originally started making hair bows because my youngest daughter, 4 years old at the time, wanted to grow out her bangs (okay, I wanted her to do so also because I thought it would look better).  Well, there was no way I was going to do that unless she kept her hair out of her beautiful blue eyes and face.  So, I called a friend of mine who makes hair bows for her daughters to see if she could make my daughter a few.  Unfortunately, she said she was too busy at the time.  So, I thought, how hard could it be.

Well, it turns out, it's not too difficult at all and I actually had fun doing it.  After making a bunch of them for my daughter (in which she has now lost half of), I decided to make a few to try to sell.  Turns out, they were a big hit.  I sold all of the bows I made fairly quickly.  So, I ended up spending quite a bit of time, money, and energy on making hair bows and I still do.  Here's a few examples...

Then, a short while later, I came across a woman on Facebook who makes jewelry.  A lot of the stuff she makes is for mito awareness.  I bought a couple of her items when I realized, again, "I can do that!"  So I did. That is now one of my favorite things to do.  Here's some of my work...
I have a friend working on a website for me to sell my jewelry.  I'll be giving part of the proceeds to mitochondrial disease charities.  It will be under the name www.dkjewelryanddesigns.com.  It's not up yet, though, so don't go yet.  I will definitely be letting everyone know.

Last, but not least, I have started making cakes.  I made one for my 13 year old's birthday last November.  I got so many compliments and I had so much fun doing it, I decided to try it again.  I made a beautiful cake for my best friend/cousin's surprise 40th birthday party.  Once again, it turned out great and I received a lot of compliments on both the looks and the taste.  And, again, I loved doing it. Lastly, I made some cupcake toppers for my cousin's daughter's birthday.  I have put pictures of all of those things below. 

I am now trying to turn any and all of these hobbies into businesses.  I am excitedly waiting the opening of my website to sell my jewelry and hair bows.  I will also be creating a website for my cake making/decorating business.  That one, however will be created by me using a program that offers a free website for small businesses for a year.  If you're interested in it yourself, go to http://www.intuit.com/free-website-builder/.  

I started a website through that program for my jewelry and hair bows, but it will completed by a friend of a friend who's starting his own website building company.  He can then use my site in his portfolio.  Plus, since I'm going to be donating a portion of the proceeds from the sales of my jewelry to Mitochondrial Disease charities, he can write it off on his taxes.  :-)  

If you, or anyone you know, is interested in any of the things I mentioned above, please comment here and let me know what you're interested in and I'll let you know how to get it.  Or, you can also find me on facebook where I post pictures of all of my available jewelry and hair bows for you to purchase.  Robin's Facebook page

That is half of what I do in my spare time.  I will post again with the stuff I do that will not make me money and is pretty much just time killers.  I will also post as soon as my 2 websites are up and running.  

Watch a video of me designing one of my cake Here

"...it is ultimately the love and support of others that gives people the inspiration and courage to get through this challenging journey." - www.friendsofjaclyn.net

"The cure for Mito is living life." - Amanda Perrotta

Saturday, June 2, 2012

My Screw Up

I screwed up today.

At about noon my 13 y/o daughter had a dance performance.  I woke up a little after 9am and we needed to leave around 11:30.  We planned on leaving around 11:15am.  That way it guaranteed we would be out of here by 11:30.  Most people would think that 2 hours and 15 minutes is more than enough time.  However, for someone with mito, rushing is not an option.  I had to take a shower with my younger daughter as well as start IV fluids.

In addition to that, I needed to eat breakfast.  Oh, but that's where I went wrong.  I completely and totally forgot to eat breakfast.

When I first woke up I had my wonderful husband bring me a cup of coffee like he does most weekends.  I usually drink my coffee for a short time before I then ask him to bring me some breakfast.  This morning, however, I completely forgot.  I was too busy thinking about the need to shower, what time we needed to leave, how long I needed to get ready, don't forget to start my fluids, interrupted by the non-stop talking 5 year old, etc. etc.

As I got ready my tremulousness and overheating with excessive sweating got worse and worse.  I just kept thinking that I was dehydrated and I had too much coffee.  So I continued to get ready while shaking like crazy and trying to stay dry, though not successfully, all the while wondering why my body would not settle down.  At one point in time my husband even asked me what we were going to do about lunch since we would be there right at the lunch hour.  I asked him to fix sandwiches for everyone.  And despite this entire conversation about lunch, It still didn't pop into my head that I hadn't eaten anything yet.

My husband finally said, "Did you ever eat breakfast?" before I realized, after some thought, that I had not eaten anything at all.  No wonder I was so shaky and sweaty!!!  I quickly ate some of the sandwich I was going to take for lunch, but I think it was too late.  Since I hadn't eaten I also hadn't taken my pills.  So here I am, trying to take my pills and eat something just minutes before we have to leave and I have to exert a lot of energy... more so than I already had.

Well, I think it was way too late.  Luckily I did okay long enough to watch my daughter perform.  Which was so cool to watch, by the way.  I think she needs to get into dance.  However, very shortly after her performance I went downhill... fast.  My hot flashes started again.  My head and all of my extremities felt very heavy.  I was sweating again... bad.

We quickly left the carnival where the performance was and my husband took me home.  On our way home we stopped to get a chocolate shake because I had started feeling like I needed sustenance but solid food would not work.  However, by the time we got home just a short 5 minutes later, I was so nauseous that even a shake was not going to go down well.  I went straight to bed, threw a blanket over me, and didn't move for about 45 minutes.  If I did, I just knew the vomiting was going to start.

Luckily as the day went on I slowly started to feel better.  Laying flat in an air conditioned house and having IV fluids going eventually got me back to a level playing field.  However, I learned my mistake.  Slow down, think about what you're doing, and always remember to eat!!!

That's me!!!

And... as I will try to do all the time from now on... here are my favorite quotes.  Most of the time it will be the same couple of quotes.  However, I may switch it up from time to time based on my post.

"...it is ultimately the love and support of others that gives people the inspiration and courage to get through this challenging journey." - www.friendsofjaclyn.net

"The cure for Mito is living life." - Amanda Perrotta

And last, but certainly not least...

To learn more about mitochondrial disease and how it affects people, please go to my page titled "What is Mitochondrial Disease" or go to www.umdf.org 

Friday, June 1, 2012

The Q & A of Helping

Maybe I should say "The Q of Helping" instead of "The Q & A of Helping" because I have more questions than I have answers.

I suppose you're wondering what I mean by "helping".  Well, let me explain...

I have now been sick for 2 years and 4 months.  For the first 6 months of being sick most people didn't realize how sick I was.  I also wasn't near as disabled as I am now.  Well, then again, yes, I was.  I think I just didn't admit it to myself or anyone else.  Once people realized how serious my condition is (which took some people over a year and there's others who still seem like they don't have a clue), they started helping us out here and there.  I can't say there was an overwhelming flood of support.  It's never been anything close to that.  However, my parents starting cluing others in to the fact that we could use some help with meals, finances, laundry, house cleaning, running errands, etc.   I finally started setting my stubbornness aside after being sick for almost a year and asking for help myself.  That took a LOT out of me.

So for about a year and a half now my wonderful husband and I have been asking for help from family and friends with various things here and there.   We receive more help than we ask for because both of us have difficulty asking.  Luckily we had people, primarily my parents, offer to help here and there when we didn't ask for it.

After awhile the offers for help slowly went away.  We have also slowly decreased the amount that we ask for help.  So here's where the questions come in....

Since this is a chronic, life-long illness, are we supposed to figure out how to live without the help and support of our family and friends?
If so, how long do I have to be sick before I'm supposed to know how to do it without support?
What makes 6 months ago or a year ago different from now?
If I'm just as sick now (or in a couple of months since this thing can be such a roller coaster) as I was a year ago, why is there a ton of support from family and friends then but not now?
Am I bad for still asking for help?
Was I supposed to stop asking at some point in time?  Once again.. when?  When do the etiquette books say is the appropriate time to start taking care of yourself and your family when your seriously ill?  Oh, wait, that's probably not in the etiquette books, is it?

On another note... Why do I have to feel so bad about asking for help?
How many times should I hear "no" before I stop asking that particular person?  If they're never able to help,  should I still ask even if I know what the answer is going to be?

I don't WANT to ask for help!  I HATE asking for help.  That's the last thing I want to do.  I would MUCH rather just do it myself, but I CAN'T!!!  I'd much rather have my husband do it, but he can't do everything all the time.  There are some things that we could not ask for help with because it's not a necessity.  However, I want the best for my kids, even if I am sick.  Doesn't everyone?  Why do my kids have to sacrifice because I'M sick.  They're not the ones who're sick.

Sometimes I just want to give up... like now.  I'm tired of asking for help when I know people don't want to do it.  I'm tired of having to ask people over and over again to only hear that they're too busy or can't help for whatever other reason when some of the time I know it's just because they don't want to.

My husband and I have both said that we just want to say "screw it!" and do everything on our own.  If that means me taking care of my 5 year old daughter by myself when I'm not feeling well, then so be it.  The one and only reason why we don't want to do that is because that means our daughters would have to deal with the consequences. (less or no extra-curricular activities, taking care of me more often, etc.)

In the end, we won't stop asking for help because we want the best for our daughters.  However, it sure would make life easier if we didn't have to.