Did you know...

Well, I'm not in the mood nor do I have the energy to finish my "to be continued" post from  yesterday.  Don't worry.  It'll get finished.  I will tell you the good news aspect of it.  Just not right now.

I'm really just not in the mood to be typing a big long post on my blog.  Mainly because I try to be at least a little witty and I am definitely NOT witty right now.  So, I'm not in the mood to be witty or type a bunch right now but it's Mitochondrial Disease Awareness week and I promised posts about mito.

On this Mitochondrial Disease Awareness Week I would like to ask ALL of my friends, family, and blog readers to do something to help raise awareness.  "What can I do," you say?  Well, a lot actually.  Are you on Facebook or do you have a blog of your own?  If so, please use your resources to let everyone know about "mito". There's the first thing you can learn... most people with Mitochondrial Disease shorten it to Mito when talking about it to friends and family.

When you're letting everyone know about mito, use one of the facts below.

Here are 20 facts about Mitochondrial Disease...

1. "Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10.   For information on symptoms and how mitochondrial diseases affect both adults and children, visit www.umdf” 

2. Mitochondria are the “powerhouse” of the cell. They combine oxygen from the air we breathe with the calories from food to produce energy. 

3. Mitochondrial diseases result when the mitochondria fail to produce enough energy. Organ systems will begin to fail and the life of the individual is compromised. 

4. Imagine your body working with one-half of its energy-producing facilities shut down. The brain may be impaired, vision may be dim, and muscles may twitch or may be too weak to allow your body to walk or breathe.  

5. Mitochondrial diseases are not uncommon. The prevalence in the US is roughly one in 2000, but because they are likely under diagnosed, the rate may be higher. 

6. Many common illnesses and conditions have been found to have defects in mitochondrial function. These include Alzheimer’s, Dementia, Parkinson’s disease, diabetes, hypertension, heart disease, osteoporosis, cancer and even the aging process itself. 

7. Mitochondrial disease can affect any organ of the body and at any age. Symptoms are extremely diverse. 

8. Physician education is critical.  Many patients go undiagnosed for years.  For me it took a year and 3 months from my severe symptoms that kept me from working and a year and 7 months from my initial symptom.

9. The United Mitochondrial Disease Foundation is the largest private donor of funds for peer-reviewed research. It has provided nearly $10 million in research. 

10. There are no effective treatments to date for mitochondrial diseases. 

11. There is no cure for mitochondrial disease – yet. Research offers the best hope for the thousands afflicted with this debilitating disease. 

12. Mitochondrial disease is caused by the body’s inability to produce energy. Symptoms and stages of the disease vary. 

13. There is no cure for mitochondrial disease.  It affects both adults and children and can be fatal. 

14. Mitochondrial dysfunction is linked Parkinson’s, Alzheimer’s, Diabetes, some forms of Autism and some cancers.     

15. 1 in every 2000 babies born will develop a mitochondrial disease.   

16. We all have mitochondria - they help us all breathe, speak, hear, talk, and walk. 

17. Your participation in this walk helps The UMDF remain the largest non-governmental contributor of research towards a cure. 

18. There are no effective treatments for people suffering from mitochondrial disease. 

19. $.86 of every dollar raised is used for programs, education and research to benefit mitochondrial disease patients. 

20. Mitochondrial diseases are not rare. Research indicates that 1 in 200 people may carry a mutation that may develop into a mitochondrial disease at some point in their life.

"Facts about Mitochondrial Myopathies" - Muscular Dystrophy Association Inc.

The above diagram shows how Mitochondrial disease is passed down from a mother to her children.  It shows why not all children inherit the disease as well as why a mother without disease can have a child with severe disease.  More mito facts to come.

The Good News and the Bad News

Something has been eating and eating at me for a little over a week now.  But at the same time I've come to some conclusions about my life and the relationships therein.  Essentially, I have good news and bad news.  And they are definitely on each end of the good vs bad spectrum.  Which one would you like first?  The good or the bad?  Well, I really don't want to wait for a response, especially since who knows how many people actually read my posts.  I could be waiting a long time.  Hmmmm....

Let's end on a high note and start with the thing that's been eating and eating away at me.  It has, unfortunately, taken a lot out of me in fact.  I'm trying to not let it.  In fact, this blog is one of the ways that I get rid of stuff in my brain.  If something is eating away at me I can post it on here and get rid of it.  It's almost as if by writing it down I take it out of my brain and put it on "paper".

As I've discussed in recent posts, I had a fundraiser party a little over 3 weeks ago.  That was followed by 2 weeks of being very ill.  At the end of the 2 weeks I was in the hospital for 4 days and 3 nights.  I had a week to recuperate and catch up on work that needed to be done before the Energy for Life walk on Sept. 15th (a week after I was discharged from the hospital).  I have sent tons of emails about the walk, posted on my blog, posted on facebook, and discussed it in person over the course of the last 3 months.  In regards to being sick for a week and a half at home, I posted on facebook about that numerous times.  Then, when I went in to the hospital, I did the same thing.  There are people who want to be updated so I used FB to do so.

I have mentioned numerous times over the course of my illness how hard it is for me when I'm real sick and I don't hear from anyone.  My "real sick" is when I'm having a mito crash.  That's always at home and usually only lasts from 2-3 days... 4 at the most.  However, this last time I was sick, I was sick for 11 days before I was finally admitted to the hospital.  During those 11 days I got one phone call from ONE friend... and that was after 7 days of being miserable and barely able to move from my bed.

I always feel that it's better to have a handful of true friends than 50 friends who wouldn't be there for you when you need someone.  Well, I have a handful of friends who aren't there for me when I really need someone.

Last winter/spring I was feeling very alone.  I had had multiple mito crashes in a row over the course of a little over a month during which I hardly heard from anyone.  So I ended up exchanging a few emails and phone calls with that handful of friends regarding the fact that I was feeling very lonely and bothered that no one was reaching out to me.  I was told by a few people that I needed to reach out to them.  They said that they don't call when I'm sick because they don't want to "bother" me.  I explained that it would be nice to get an email, text, facebook message, anything from them just to let me know that they care and I'm in their thoughts.  At first I was upset that they wanted me to call them when I'm sick.  I thought that that's what friends do... they reach out to each other during difficult times. (like when I'm sick over and over again for over a month)  However, I took their advice and tried to reach out to them more often.  Well, that didn't work either.  So much for that.  At least for one friend, that is.  I reached out and reached out and reached out, but to no avail.

The 2 weeks I was really sick and in the hospital were really hard on me, physically (obviously) and emotionally.  This is what's been eating at me... I was thrilled that all of my friends (except one who had to work) were able to make it to the fundraiser party.  But my happiness ends there.  I haven't talked to a few of my friends since then.  When I say I haven't talked to them, I mean everything.  No replies to my status updates on facebook where I was keeping everyone updated on my condition (sick!).  No texts. No facebook messages.  No emails. No phone calls.  And, last but not least, definitely no visits in the hospital.

I just couldn't believe it.  Two full weeks of being sick and not one word from my "friends".  Not a single friend came to visit me in the hospital.  Not one.   No offers to help my husband and the girls while I was sick for a week and a half or during my hospital stay.  No phone calls to check on me once I got home.  (I'm only talking about friends here.  My family was a huge support for me while I was sick.)

Then there's the Energy for Life walk.  Everyone knows how important this event is to me.  If they haven't heard me say it one of the millions of times on facebook or via email, they should be able to figure it out considering the number of times I mention it to people and/or the number of emails I sent out over the course of the last 3 months.  This event was important to me last year.  This year it is 100 times more important since I am the chair planning the event.

However, only half of my handful of friends came to the walk and of those not all of them donated and/or raised money.  I never heard from the ones who didn't come as to why they couldn't come.  They were able to attend the fundraiser party and spend money there when they get something in return, but couldn't donate to the walk itself, volunteer for the walk, or come walk with us.

So, during the last 3 weeks I have spent 11 days really sick in bed, 4 days in the hospital, and one beautiful Saturday morning at the most important event I will attend all year.... and half of my friends were non-existent for all of it.

Don't get me wrong.  I'm not saying they've never been there for me, because they have.  And from time to time I feel like I have friends that care.  However, within a period of one week I had my lowest (hopefully) and highest moments of the year.... being hospitalized for 4 days and watching the event I've been planning for months go off without a hitch while raising over $32,000 for research for a cure for Mitochondrial Disease.

And when that happens without the support of  my "friends"...
It hurts.  It breaks my heart.

I can't do it anymore.  I'm done.  I keep holding on with all of my might and I just can't keep doing it.  I'm not young and healthy anymore.  I can't and don't want to have friends who are just there for the good times and when it's convenient for them.  I need friends who are willing and able to understand me.

Other people may be able to have one or two good/true friends and a bunch of friends who are only there when you're in a good mood and ready to have fun.  I can't do that.  I don't go out very often, and when I do, I need some friends who will understand when I need to leave early or cancel at the last minute because I'm too sick.  I need friends who will comfort me when I'm so sick I have to be in the hospital.  I need friends who want to support my efforts to raise money for research for the disease that is changing my life more and more everyday.  I need a friend who will be here for me now, instead of wishing they were there for me while attending my funeral.

Now for more bad news....     it looks like you will have to wait until tomorrow for the good news as this is enough typing for me for the day.


A true friend is someone who is there for you when he'd rather be anywhere else. - Len Wein





TO BE CONTINUED.....

A successful and enjoyable walk

Phew!  I can finally take a breath!  

Last Saturday, Sept. 15th, was the Energy for Life walk to benefit the United Mitochondrial Disease Foundation.  As I'm sure I've already said before (I never know if I'm repeating myself or assuming you already know something), I was the chairperson for this year's walk.  It's normally run by 2 people with a long list of volunteers over the course of a 6 month planning period.  However, this year it was run by 1 person with a very short list of volunteers over the course of a 3 month planning period.  Oh, and the 1 person running it has Mitochondrial Disease and has to work around periods of illness. So, needless to say, it wasn't easy. I had to plan it with half as many people and half as much time as needed.  

However... I pulled it off!  In fact, I think I pulled it off quite well, if I do say so myself.  You might be thinking that I'm a little biased.  However, I'm my own worst critic.  I am a virgo, type A personality, "anal", etc.  Therefore, I expect everything to be perfect.  After the fundraiser party a few weeks ago I thought it went well but I still had a list of things that didn't go the way I wanted them to go.  There's only one or two things that didn't go exactly as I had planned, but they were very little things and I am not really bothered by it.  In fact, I didn't even think about those things until 24 hours after the walk.

The total amount raised for UMDF as of the end of the walk yesterday was $27,639!!!  AND we still have money coming in!  Now, I'm not positive about this, but I think we raised more this year than was raised last year.  As I was planning the walk I kept telling everyone, including reminding myself, that, because of the late start and low number of planning helpers, I would be happy if we raised as much money as last year and had about the same number of walkers.  So I am absolutely thrilled that we raised the bar from last year's walk.  I will keep everyone posted with the final total as the donations come to a halt in the next month.

Now, for team Mito*GONE*Driacs.... Our goal last year was $5000 and we raised $5122.  Now that's awesome.  I raised the goal this year to $7500.  At the end of the walk yesterday our team had raised $8,900!!!!  Holy cow!  The person from the national office who enters in the money received via snail mail credited our team with the money from the sponsors I acquired ($3k).  However, I told her that it was sponsor money and needed to be credited to general walk donations.  So that $8900 is 100% fundraising on the part of Chris and I and our team members.  Way to go team!!!

A few people have already asked me if I'm going to do it again next year.  My answer has been that I'm going to wait a month or two before I make that decision.  I am also going to wait until I can talk to a person or two.  Unfortunately my brain has had other things in mind.  I have not been able to stop thinking about next year's walk and if I want to do it again.  

The main reason why I wouldn't do it again is that I don't like the way the national office wants a lot of things done.  They pretty much want everything to be cookie cutter to the rest of their walks.  I, on the other hand, have some great ideas of how we can make more money and grow the walk each year instead of it staying around the same number of participants.  However, they will not let me do some things my way.  I just don't see it growing with the way they have it set up, at least not in this city.  

I do have another reason for not wanting to do it again... running.  The EFL walk is just that... a walk.  Being a former runner, and one who absolutely loved it, I would like to get a 5K going.  I can see that format growing larger each year.

For right now I am not making any decisions.  Just thinking.  A LOT.  If I could stop all of the thinking, I would.  

It is time for me to rest.  Both for today and for the week.  

There is one thing I can do while I'm in bed resting.  Write blog posts.  This is Mitochondrial Disease Awareness week.  Last year I posted "What Mitochondrial Disease means to me".  I will be doing something similar this year.  There's also something that I've been wanting to post since I returned home from the hospital but just haven't had time.  I will hopefully post that soon, too.  So keep you eyes peeled.

Mito Crash or Mito Setback?

Last week I let you all know about the fundraiser my husband and I held at our home and the mito crash that ensued because of it.  I also explained that it seemed as though that mito crash was different than the rest.  At the time of my post I had been sick for 5 days when my normal mito crashes only last 2-4 days at the most.  Well, it ended up lasting MUCH longer.  On day 11 I finally got in to see my doctors.  I saw my primary care doctor in the morning, had labs drawn, then saw my GI doctor.  My primary doc wanted to try to increase my nausea meds and send me home to see how I did.  He was checking labs to make sure I wasn't becoming malnourished and/or dehydrated.  After having my labs drawn I went straight to my GI's office.  After explaining to him how the last week and a half had gone, he immediately said that he wanted to put me in the hospital.  He evidently recognized that I was already too weak to wait a few more days to see how an increased dose of nausea meds would help.  So I went straight from his office to the hospital to be admitted.

I was started on IV fluids with Dextrose and Potassium.  They did some lab work again the next day as well as a xray of my abdomen and chest.  They primarily wanted to see how much stool was in my bowels still.  Three weeks prior, however, I was in my GI's office because my abdomen was extremely distended and uncomfortable.  It was not because of small bowel bacterial overgrowth.  It was because I was full of stool.  The week before the party and before I got so sick I emptied out most of that stool.  When I got really sick after the party, I had already gotten rid of a lot of the excess stool, evident by my abdomen that was no longer extremely distended.  Therefore, I knew that my sudden inability to eat or drink was not from being "backed up".  I was feeling good each and every day up until the day after the party.  So it was very evident that my increased activity caused my drastic and sudden decrease in GI dysmotility, not an overload of stool.

My two doctors, however, concentrated on getting my bowels to move for the first 36 hours.  Once I had a bowel movement, my doctors thought I would be magically cured.  Here's a shocker... I wasn't!  My nausea had gotten a lot better after 24 hours of IV fluids.  That was also the same time that I was able to decrease the amount of stool in my abdomen.  In other words... I took a shit.  (Hey, it happens.  Plus, I've told you all before that I'm not shy, not even when talking about poop.  We all do it.)   So now the docs think that my nausea's better because I had a bowel movement but I'm pretty sure it was better because I had 3 Liters worth of IV fluids with Dextrose in my system by that time.

I ended up staying in the hospital for 4 days and 3 nights.  The entire time I was there I was receiving the IV fluids.   I was still only eating up to 10 bites at the most at each meal.  However, I had not vomited since I was admitted and my nausea was better in between meals.  My GI doc changed a couple of my meds and sent me home.

I have been home for 3 days.  I am still not eating much but I've been able to drink quite a bit more than I could prior to being in the hospital.  I will start daily fluids tomorrow.  It took a few days to get the doctor to order them from the infusion company.  Nothing's fast in the medical world.

I am also going to be talking to a dietitian/nutritionist at Thrive Rx, the company that provides my fluids.  They have quite a few patients with Mitochondrial Disease because the mito specialist I see in Atlanta uses this company.  I had a very interesting conversation with them as well as my facebook friends who have mito.  It seems as though many/most people with mito have completely normal labs even when they're very sick with nausea and vomiting causing dehydration.  They also, like me, do not lose weight even after multiple weeks of eating less than 500 calories per day.  Even with zero activity and laying in bed all day, someone should still lose a lot of weight taking in that few amount of calories per day.

My primary care doctor has concentrated on what he sees on paper and, therefore, doesn't realize how sick I am.  I'm hoping that talking to the nutritionist at Thrive Rx and having her talk to Dr. Kendall, my mito specialist, will help.  The two of them can talk to my primary care physician to explain that the worst thing for someone with Mitochondrial Disease to do is fast.

When I went into the hospital last week I was so weak I could barely stand on my own.  My husband was having to help me with everything.  I regained quite a bit of strength while in the hospital.  I left the house today for the first time since coming home from the hospital.  All I did was run a quick errand with my husband.  It made me sick.  By the time I got home, I was very weak and nauseous.

So it seems as though I'm going to have to be very careful for awhile.  As you can tell by now, this was not a normal mito crash.  This was a mito setback, or a mito progression.  I may be heading down the G/J tube road soon, but that's a completely different story for a completely different post for a completely different time.


Only 4 days until the Energy for Life Walk!!!!!  Please help us raise money for a cure!!!
To join my team, click here, then click "Join Our Team".
To donate, click here, then click "Donate".

See you there!!!!!!!!!!!

My version of "paying" for a fundraiser party

Last Saturday my husband and I held a fundraising party for United Mitochondrial Disease Foundation (UMDF) called Shopping for a Cure.  With the Energy for Life walk coming up I had decided to put together this party about a month ago to try to raise more funds for the walk.  I had about 9 or 10 people from various different home/party based sales companies set up in my house to sell their products.  They then donated their profits to UMDF.  It seemed to have been a success.  Quite a few people came and "shopped for a cure".

I knew it was going to be hard work and it would take a lot out of me, just like the walk will in a few weeks. However, I didn't think it would be this bad.  Here's that roller coaster I ride again.  The party not only created a physical roller coaster, but a mental one as well.

The party itself was great and I had a lot of fun.  I think we raised a good amount of money for UMDF and the EFL walk but I won't know exactly how much for another week or so.  I felt pretty good the day and night of the party.  However, it sent me into a mito crash that I have yet to recover from 5 days later.

I have been sick since Sunday morning and it is now Thursday night.  I normally get over a mito crash from too much activity like that within a few days.  That's when it's worth it to me.  When it's something important to me, like the fundraiser, it's worth it to me to have to be sick for a couple of days.  However, 5 days is really pushing it.  I can start feeling better any time now!

My main problem is that I haven't been able to eat.  Every time I try to eat something with any substance I get very nauseous and/or vomit.  That means that my diet for the last 5 days has consisted of orange sherbet, pudding, chicken broth, toast, and crackers.  Even the crackers made me nauseous once.  The two worst things for a person with mito is infection and fasting.  I may not be completely fasting, but it's pretty close considering how few calories I'm taking in each day.

The second downfall of this roller coaster is the emotional side of things.  I was so thrilled to have everyone here at my home for the fundraiser.  That happiness has completely faded away.  Being sick is so lonely.  Laying in one spot day after day doing the same thing gets so old.  Feeling so sick sucks.  The part that makes it suck even more is when friends and family don't call to check up on me to see how I'm doing or to see if they can do anything to help.  Luckily my parents are there for me a lot.  However, I wish I had friends that would call me to see how I'm doing.

I'm friends with a bunch of people with Mito on facebook.  When they post that they're sick or their child is sick they get a ton of responses... "you're in my prayers"..."feel better soon"..."I'm sorry you feel bad."  You know, I don't need a ton of responses.  Would it be nice to know that a lot of people have me in their thoughts when I'm unable to get out of bed and feeling awful for 5 days?  Of course.  But what I need instead is less than a handful of responses from my "good" friends.

It is SO hard to be sick.  The longer it goes on, the harder it is to handle.  But the loneliness and isolation just makes it so much harder to handle.  A few months ago I published a post titled "Support through this challenging journey".  It explains why support is so important and how critical it is to have support in order to deal with this illness.  I found this quote and it says it better than I possibly could.  "...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   So it is, then, the lack of support that pulls me down and makes me wonder how I can continue on in this life while feeling the way I do all the time.  If it wasn't for my husband and my parents I would have no one that I can truly count on.  I am so jealous of those people who have sisters, real and friends who are like sisters. I just wish I had friends who I knew would always be there for me when I really need them.  Isn't that what true friends are?  If that is the case, I have one true friend.... he's also my husband.  I am so thankful for that.  I wouldn't be able to get through this without him.

Still Alive

Yes, I'm still alive.  It's been 2 and a half months since my last post.  Luckily, it's not because I've been in the hospital, too sick to write, or dead.  The great news is that I've actually been too busy to write.  That is a great thing for someone who has spent the last 2+ years bored and feeling as though my life is completely useless.    The only bad news is that I actually like to write.  I like to share my most intimate thoughts and private life with the entire world via the internet.  Yes, I'm completely crazy.  I'm well aware, so you don't need to remind me.  I have, over the last 2 months, thought about writing a blog post more times than I can count.  There have been so many times that I've though, "Ooooo... I need to write a blog post about that!" to only forget 5 minutes later because I have so many things taking up space in my brain.  You don't have to worry, I'm not going to try to catch up by writing all of the posts I've wanted to write over the last couple of months.  But, I do need to catch everyone up.  Sooooo... here's the abbreviated version of all of the posts I've thought about writing in the last 2 months but didn't have the time or the energy to do so.

I'm on my own.  It seems that that happens more often than not.  In this case, I am speaking of the Energy for Life walk.  A little over three months prior to the walk I was asked to co-chair the event.  I was very happy to oblige.  A few weeks later the other co-chair stepped down.  I'm okay with it.  It's hard work and it'll continue to be hard work up until the walk.  However, it makes me happy to not only have something to do but to do something I can feel proud of.. to do something that gives my life purpose.
About 4 months ago I had decided to plan a 5K to raise money for mitochondrial disease charities.  Immediately after that decision I was sick for over a month.  That made me decide to hold off on the 5K until next year as I needed a full 6 months to plan and I was down to less than 5 after my sickness.  I told a couple of people about my plans and got a not so stellar reaction.  It was quite obvious that they not only disagreed with my decision, but didn't think I could do it.  It's always handy when that happens, (Yes, I said handy) because that just makes me want to do it even more.  Makes me want to prove them wrong.  Well, I guess now I have my chance.  Only in this case I'm doing it with less than 3 months to plan.  So, to those of you who doubted me, thanks.  Thanks for giving me one more reason to have a successful event.

A trip of a lifetime.  That is what my husband, my 2 daughters, and I had the first 2 weeks in July.  When we returned I couldn't wait to tell the entire world about our trip.  It is probably best that I didn't get around to it, because I would've probably rambled on about our trip while showing you pictures all while you yawn and think "is she done yet?".  Nobody wants to sit through a slideshow of 100+ pictures of someone else's vacation while that person rambles on about every single detail.  I will keep it short... Our plan was to take 2 days to drive to Florida.  However, on our way, my husband's father called to let him know that his grandma had passed away.  So we took a detour through Maysville, KY for 24 hours to pay our respects.  When we finally made it to FL we stayed with my wonderful step-brother and his family for 5 nights, during which we swam, celebrated Independence Day, ate great food, played at Universal Studios, and had a lot of laughs.  Following that, we drove to the other side of FL to stay in my husband's boss's condo for 4 nights.  The condo was right on the beach and gave us an absolutely gorgeous view from the 8th floor.  While there we spent 2 days at the beach, one day at Hollywood Studios, and one day at Walt Disney World.  I wish I would've remembered/had time and energy to write about our trip right when we got home.  There are so many wonderful memories to tell as well as tips for the disabled traveler.  If anyone wants to hear my tips for the disabled traveler, let me know and I'll make a post about it.  If I know there are people interested, I'm more willing to write about it.  As far as the wonderful memories, I will just tell you my favorite.  My daughter's birthday was only 4 days after we went to Disney World Magic Kingdom.  My sister-in-law suggested that we get her a button that says it's her birthday.  That was the best thing we did.  Every disney employee told her happy birthday and when we watched the parades (one during the day and the electric light parade at night) about 50% of the characters looked directly at her and said "Happy Birthday!"  It brought me to tears just about every time.  It almost did as I'm telling the story.  There couldn't have been a better birthday present for a little girl turning 6 who loves the Disney princesses.

The start of a business.  At the beginning of the summer I posted about turning my hobbies into businesses.  Unfortunately, the walk has taken up almost all of my time.  However, I am trying to get my website completed in the next week or two.  I'm very excited for that.

Health, or lack there of.  I was very amazed at how well my body held up while we were on vacation.  My body did, however, let me know that I wasn't being nice to it by the end of the trip.   The 2 day drive home was not fun with muscle pain, fatigue, headache, and nausea.  I didn't complain much, though, because I was so thankful that it all held off until the last day of the trip and then the drive home.  However, my health has not been great since the trip.  About every 3 months the medication I am taking to keep my GI system moving stops working.  I've been through countless different medications since my motility drastically slowed about a year ago.  The most recent medication I've been on quit working right before we left for our trip.  I won't give you all the details of my bowel movements over the last couple of weeks.  Alright, hold the applause.  I will just tell you that for a couple of weeks I looked like I was 7 months pregnant and I was having the exact opposite problem of what I normally have in regards to the movement of my lower GI system.  Thanks to a fellow mito friend, my GI doc diagnosed me with small bowel bacterial overgrowth (sbbo).  You see, my GI doc is good at faking like he knows a lot, but in reality, he is fairly clueless about motility issues and completely clueless about mitochondrial disease.  So, I said "thanks to a fellow mito friend" because she suggested that I may have sbbo.  I then asked my doc about it after he speculated for a few minutes about what could be wrong with me without mentioning sbbo.  After asking me a few questions he then agreed that it could be that.  He ordered an xray and stool sample.  Once those come back negative he will know that it's sbbo (even though I'm already sure it is), and I will start antibiotics.

In addition to all of the above, I've been to the Lake of the Ozarks twice, once with the entire family and once with just my husband for some much needed R&R, as well as the zoo.  I decided a few months ago that I needed to start living by my favorite quote, "The cure for mito is living life" by Amanda Perrotta.  So that's exactly what I'm doing.

So that covers all of the things that I've done or have happened to me in the last 2 months that I've wanted to blog about.  There are plenty of other things I've wanted to blog about but those all had to do with thoughts and feelings.  With school starting in a couple of days I will have more time and once the walk is over I will have a lot more time.  Hopefully my business will be at least somewhat successful and it will keep my busy through the winter months.

Until next time...  I leave you with a few questions to ponder.

Do your friends and family know that you love them?  How do they know?  Do you tell them or just assume they know?  Do your words say "I love you" but your actions say "I could really care less about you"?

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.

Thanks!!!!!

Click Here to Donate