Wednesday, October 5, 2011

Thank you... and other news

I have been either keeping busy, or not feeling well.  Which means, I have not had the time to post and when I've had the time, I haven't had the energy.   However, I did just send out an email to friends and family to update everyone on what's been going on since the walk.  So, instead of typing the large majority of it over again... I'm going to cheat by copying and pasting.  :o)

Hi all.  

First of all, I want to thank all of you for spending your precious time walking with me and Team CTS at the Energy for Life Walkathon for UMDF.  I greatly appreciate all of your donations and the time you may have taken to ask for donations from others.  I know it is never easy to ask for money, especially in these tough times.  So I am very grateful to all of you who did so.  It was a huge success!  I have actually been stalling to send out thank you's to everyone because I wanted to be able to let everyone know what our donation total was.  However, the UMDF national office is working very diligently to count all of the donations from 7 walks across the nation that were held in September.  On the day of the walk, the total, for all teams' donations, was approximately $20K. As soon as I know the totals for our team, I will let everyone know.

As many of you may already know, September 18th through the 24th was Mitochondrial Disease Awareness Week.  Thank you to those of you who changed your Facebook picture, or anything else you may have done to help spread awareness.  Every little bit helps.  I used my blog to raise awareness by posting multiple times that week about how Mito affects me.  If you haven't already, please take a few minutes to check it out and help raise your awareness of mitochondrial disease. And since you're already here, it'll be much easier.  I have attached the fall newsletter for UMDF.  In this case, I posted the link below. There is an article about me on page 20.  There are also multiple other stories about wonderful people that I have met recently who have mito or have a child (or multiple children) with mito.  Deidra Atchley is the woman who does most of the work to put on the walk (and a 5K prior to the EFL walk).  Her family's story is on page 19.  Carolyn Slyzis-Scholey suffers from mito along with all of her children.  She makes beautiful jewelry in order to raise money for lawyer's fees.  You can read more about her on page 33.  You can also see and purchase her beautiful jewelry, and help her raise money for lawyers fees at the same time, by going to

Carolyn is the reason why I have decided to start making jewelry myself.  I started making hair bows for Danica only a few months ago.  I wanted to make a couple of bracelets to give as gifts to the top two fundraisers on Team CTS.  Congrats to Janel and JoEllen, by the way!  I enjoyed making those bracelets so much that I have decided to start selling my bows and jewelry.  I will keep everyone posted on the details... what I'm selling, where I'm selling it, etc.

I wanted to let you know that Danica is selling cookie dough for a school fundraiser.  Now, I have begged for enough money over the last couple of months.  I'm done.  Therefore, this is not me asking.  This is me letting you know, so if you want to buy some because you like the cookie dough, you can.  Here's the details... You can buy pre-portioned cookies, 2.7 lbs separated into 48 cookies, for $15 OR a tub of cookie dough that is also 2.7 lbs.
These are the choices... Oatmeal raisin, white chocolate macadamia nut, m&ms, chocolate chunk, sugar, peanut butter, snickerdoodle, walnut chocolate chunk, reese's peanut butter cup, or triple chocolate.  The "easy scoop tub" is $13 and the pre-portioned cookies are $15.  Like I said.. if you don't want them, don't buy them.  

If you haven't heard much of me recently, there's a reason for that.  I haven't been feeling very well.  My GI problems have been getting a LOT worse recently.  Which, unfortunately, makes everything else worse as well.  The problem is that my digestion is very slow... almost snail like.  Therefore, many times I am unable to eat much of anything without getting nauseous.  If I eat too much, it'll come right back up again.  However, if I don't eat often enough, I get nauseous.  At times, even drinking water makes me nauseous.  Therefore, I have not been able to eat or drink much recently.  As you can imagine, that causes all of my other symptoms to flare up.  Dehydration and fasting are the worst things for people with mito.  So, since I haven't been feeling well, I haven't felt much like talking.

I am seeing a Gastroenterologist.  They have done a couple of tests and am planning a couple more.  I am waiting on a medication that should hopefully help with my dysmotility (lack of motility in my GI tract).  It is not approved by the FDA in the US so I have to order it online.  I am hoping that the medication will help for awhile.  Unfortunately, this is a sign of something I was hoping was not going to happen.. disease progression.  I have a new friend, Naomi, who "walked" with our team.  She was in a wheelchair as well.  You may have met her. She has a lot of the same problems I do.  Unfortunately, she may be getting a G-Tube soon because the medications are no longer working for her.  She is not able to eat or drink much of anything, like myself, but she has tried multiple different medications over the years which work for a little while, and then stop.  Let's hope that I do not ever get to that point.  I do hope, however, that the g-tube helps her get the nutrition she needs.

I have hired a care-taker to help two days a week.  She comes Mondays and Tuesdays (she works the other days of the week) to help with errands, laundry, cleaning, taking care of the girls, etc.  It has been a huge help to have someone around on a regular basis to do the things I can't, especially now that I am having to take care of the girls 2 hours everyday.  With the extra cost of a care-taker and all of my medications that insurance doesn't pay for that are starting to really add up, Chris has been working a few extra hours a week again.  If anyone feels like they ever want to help out, we could still use it, even though we've hired someone.  There are days that I am able to take care of everything I need to, including the kids, but there are plenty of days, especially with my increasing health problems recently, that I can barely take care of myself.  The girls do have half days and/or days off of school that I could always use help with.  I used to use the care calendar, but I decided a few months ago to delete it because it really wasn't getting used.  So, if you really want to help out, just let me know what you would like to help with, and when and I'll be thrilled.  :o)

I have also started volunteering at Danica's school a couple of days a week for one hour each time.  I will be a "book buddy" for one 3rd grader and a 4th grader.  Basically, I just help them with their reading skills for 30 minutes because they have been selected by their teacher because they are a little behind in their reading.  I am also helping with little things in Danica's classroom for an hour every Thursday.  I chose to be a "book buddy" for the older kids because I don't think I could handle Kindergartners twice a week.  :o) I signed up to do it a couple of weeks ago.  We'll see how it goes with the way I've been feeling.  

So, now that you are officially updated on the lives of the cripple and her family, and my arms are hurting like crazy from all this typing, I think I'll finish up.  I hope you all are doing well, and I will let everyone know about the walk totals as soon as I know.

Much Love,

Okay... I can't get the newsletter on here right now.  I'm sure it can be done, but I'm wearing down very quickly so my brain is no longer working.  I'll put a copy of the articles up later.

I hope everyone is doing well.

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