Thursday, September 27, 2012

Post Mitochondrial Disease Awareness Week Education - Questions Answered



Last week was Mitochondrial Disease Awareness Week.  I tried to share mito facts here and on facebook.  I wasn't as successful as I was last year because I had other stuff going on that I wanted to share and/or get off my chest.  So, I'm continuing it past the official awareness week so I can still inform people about Mitochondrial Disease.

At the end of the week last week I asked everyone on facebook what they wanted to know about Mitochondrial Disease.  I actually got the idea from another mito facebook friend who did the same thing.  I thought, "what an excellent idea!"  Instead of me telling you all random things about mito that you may or may not already know, I'll ask everyone what they want to know.  Two facebook friends answered the call and asked me questions.  Instead of answering the questions in the limited space I have on facebook, I decided to answer them here.  Unfortunately, Mitochondrial Disease took a hold of me yet again the last 4 days.  Therefore, I'm just now getting around to answering their questions.  Better late than never!

The first question was "How does this disease impact your daily life the most?"  Good question, Shaylene.  This disease affects me a lot more drastically than what people might imagine if they have only met me once and/or see me out and about.  That is why it is called an "invisible disease".  You may not know it by the looks of me, but I spend 90% of my life in a laying or reclining position (i.e. in bed, couch, recliner, etc.).  Due to the malfunctioning of my autonomic nervous system, I am unable to tolerate being upright for long periods of time.  I have a VERY difficult time with standing.  I am unable to stand for more than a few minutes at a time.  Sitting upright with my feet below me causes a lot of problems as well.

Because of this, I had to quit working as an emergency room nurse in December 2009 and haven't been back since.  I am also affected by exercise/activity intolerance.  Walking up a flight of stairs is difficult for me.  I have to rest for a couple of minutes after doing so.  Going to a store to buy something or going to a doctor's appointment really wears me out.  If I'm not careful about the amount of activity, it will cause me to go into a "mito crash".  I explain mito crashes here - Crashes and supply and demand.

So, prior to getting sick, I was a very active person.  I worked an average of 4 twelve hour shifts as an ER nurse.  I ran 5Ks, 10Ks, and 2 half marathons while also lifting weights 3 days a week, all to stay healthy.  I was the type of person who never sat down.  On my days off I enjoyed spending time with my kids and getting housework done.  Yes, amazingly enough, I actually enjoyed doing housework. That's what happens when you're a clean freak with a Type A personality.  Now, I am barely able to fix myself lunch some days because I'm too worn out to do so.  I have had to teach myself how to stay content while sitting in one place for hours at a time while also trying to find things that I enjoy doing that can be done from a sitting or laying position.


The next question is "Can you explain, in lay terms, the Complex I and Complex III?"

There is an explanation, in not-so-layman's terms, of Mitochondrial Disease: Complex I Deficiency here and Complex III Deficiency here.  However, you wanted it in lay terms... and I don't blame you.  You have to have a phD in science to understand the breakdown of my disease at times.

I am able to explain this on a whim.  However, since I had time, I wanted to look at a couple of references to figure out exactly how I was going to phrase it.  The biggest thing I wanted to do was to find a good, non-scientific, diagram that shows the 5 complexes.  When I was looking for a good diagram that could be understood by someone who's not a scientific researcher by trade, I came across a video.  The exact video, in fact, that is already on my blog in the "What is Mitochondrial Disease?" section at the top of the page.  I haven't watched it in awhile so I took a few minutes to watch it to see why it kept popping up when I was searching for an explanation of the electron transport chain.  It turns out, that the video does a MUCH better job of explaining the complexes and the electron transport chain than I could ever do.  Especially since it explains it while showing the viewer animations and diagrams of the process.  So, I am going to do an explanation in layman's terms and then ask you to watch the video.  (I originally typed "quick explanation" and have now come back to delete the "quick" because I, of course, didn't do a "quick" explanation.  I know, I know... you're shocked that I got a little wordy.)

Mitochondria exist in all cells in the human body except red blood cells.  (Very good explanation of mitochondria and their role in cells here.)  The mitochondria produce energy using oxygen and glucose from the food we eat. The electron transport chain, the energy generating system of cells, exist in each and every mitochondria in the cells.  The energy that is produced in the electron transport chain is called ATP.  The electron transport chain uses 5 steps, or complexes, to produce the ATP.  If one of these steps, or complexes, malfunctions, the energy cannot be produced and that cell will not work properly.  While the place inside the mitochondria that creates the ATP (energy) is called the electron transport chain, the process of producing the ATP is called oxidative phosphorylation or OXPHOS.  

(Side note - I was diagnosed via muscle biopsy.  A surgeon cuts into my thigh (giving me this beautiful scar) and cuts out of piece of my quadricep muscle.  The mitochondrial disease specialist and researcher then looks at a piece of that muscle under a high powered microscope while inducing the process of oxphos.  He is then able to see that the entire process is not working and, somehow, able to determine that it is complex I and III that are malfunctioning.  Isn't science amazing?!?!)
Imagine an assembly line in a factory.  There are 5 people at 5 different stations in the assembly line. Let's say they're building a lamp.  If two of the people from the assembly line are missing (they called in sick, damn them!), the lamp will not be completed. (In my case, complex I and III "called in sick".)  In the case of our lamp, the cord and the lightbulb will not be installed in the lamp.  Therefore, the product that reaches the end of the assembly line, the lamp, which is not a completed product, cannot be shipped out to the customer.  The customer will not have what they ordered and, therefore, cannot use it.  So the customer now has no light to be able to see and, therefore, cannot do his/her job.  

The "customer" is the cell.  If that cell is in a muscle, the muscle will not work properly.  It will get tired and weak very quickly due to a lack of energy.  When muscles are overworked, they produce lactic acid.  A build up of lactic acid causes pain.  Many of you experience that when you have lifted weights at the gym and are then in pain a day or two later.  That is because the muscles were being worked beyond the limit of energy being produced by the mitochondria.  That happens to my muscles everyday.  Just holding my arms up to brush my hair works my muscles beyond the limit of energy that's available.  

Mitochondria exist in different amounts in different areas of the body.  While there are no mitochondria in red blood cells, there are hundreds, if not thousands, in each muscle cell and the cells within the brain and neurological system.  This is because the two organ systems that require the most energy are the muscles and neurological system.  That is why, despite the major differences between each and every person with mito, almost all people with mito have neuro and muscle symptoms.

So I went a little further than just explaining the complexes.  I thought I would use the opportunity to continue the explanation further into why two of my symptoms occur - muscle pain and weakness.

If you still don't understand it, or you want a better explanation, watch this video...


-"I seem to myself, as in a dream, an accidental guest in this dreadful body." - Anna Akhmatova


Friday, September 21, 2012

...and the Good News

Last time on My Life as a Mighty Mito Mamma...
I'm not going to recap something I wrote 2 days ago so you'll just have to go read it...

Something happens that amazes me, astonishes me, surprises me, and makes me go "Hmmmmm" all at the same time.  That is the "good news", even though it's not news.  It's really just the "good" part of the story.

So, after telling you about how sad it makes me that the people I think are close to me and actually care for me prove otherwise with their actions, I'm now going to tell you about how happy it makes me that people I barely know or complete strangers do remarkably kind things to help me.  (I think that was the world's longest run-on sentence... but I don't think my 12th grade English teacher is reading so I'll be okay.)

As I've been dealing with the upset of final proof that certain people really just don't give a shit as much as I thought they did, I have also been dealing with learning how wonderful some people in this world can be.  Unfortunately, the kindness of others that I've experienced has not completely outweighed the apathetic nature of my "friends" and some family.  It's getting there, though.

As all of you know by now, I was the chairperson for this year's Energy for Life walk.  Chairperson or not, I try my hardest to raise money for the EFL walk and United Mitochondrial Disease Foundation.  I also ask (make that beg) my family and friends to walk with us as well as raise money and spread awareness.  

As I mentioned in the first half of this blog post (2 days ago), not all of my family and friends walk with us or raise money.  I understand if you can't walk due to medical reasons.  However, if you can't walk, you can volunteer.  I start telling everyone I know about it over 2 months prior to the walk.  How many people already have plans on a Saturday morning 2 1/2 months ahead of time? The answer is no one, unless they're traveling.  Okay, so you can't volunteer because you have plans.   You can donate money.  Oh, you're broke because of this shitty economy?  That sucks.  Well, you can still raise money and awareness by asking everyone you know to donate and request that they ask everyone they know to do the same.  Most people, however, do 3 out of the 4 (walk, donate, and fund raise) and some even do 4 out of 4.  

So, if you supposedly care about me, why is it that you were unable to do any of the things listed above?  Insert lame excuse here... or long list of lame excuses to cover all 4 of the things someone could do to participate.

Then there's the people who've never met me who donate $500.  Not only has the person who donated that money never met me, but they also barely know the family member who asked them to donate.

I do have one friend who works her ass off to raise money for the walk.  She even donated her time this year to help me plan and prepare for the walk despite having a family of her own to take care of and a full time job.  While my friend (we'll call her "rock star" for the purposes of this post) was fundraising at work she was asked to explain Mitochondrial Disease.  She explained the disease to the best of her knowledge to her coworker.  He then asked her if I have kids.  She, of course, said yes.  He asked how mito is affecting my kids.  Rock Star told him what she knows about how it's affected my kids (which isn't a ton, but a little).  He said "it must be really hard on the kids".  She said "yep, it probably is."  He asked her how we're doing financially and she told him we have lots of medical bills,etc. and that I had just spent 4 days in the hospital the week prior to their conversation.

When they were done talking, the coworker gave Rock Star $100 for the Energy for Life walk.  That is awesome!  A hundred dollars from someone who's never met me.  I was ecstatic to hear that.

A little while later, the same man came back to my friend's office and gave her another $100.  This time, however, he told her it's for my husband and I to spend on my kids!  He told her to make sure I use it on my two girls - birthdays, Christmas, sports, or other activities... whatever I want for them.  

Wow!  Needless to say, I got a little verklempt.  I was practically speechless.  And if you know me, that means a LOT.  It takes a lot to make me speechless.  This person also wanted to be sure to remain anonymous as well.  Granted, I wouldn't have known who it was even if I knew the name.  But he didn't want to take any chances, I gather, that he would be recognized for it in any way.  Talk about selfless.
  


Side note - This is funny.  I wanted to put that SNL video here because I used the word "verklempt".  At the beginning of the video Mike Meyers (Linda Richman) says, "First of all, I wanna say 'Happy Birthday' to my daughter, Robin."  Lol.  "Why is that so funny," you ask?  Well, my name is Robin and today is my birthday.  

So, why is it that a complete stranger can donate $200 while my "friends" can't donate $5?  Why is it that a complete stranger takes more time to ask how I'm doing, what our financial situation is, and how my kids are doing than most of the people I know?

I guess the only difference is that those people don't know me.  That's the only thing I can tell.  I must not, therefore, be as good of a person as I had previously thought I was.  It must be a personal thing.  What else could it be?  Why else would someone who doesn't know me go out of their way to help but people who do know me could care less?

The only other thing I can think of is that people in this world SUCK!  I expect people to be kind and giving and loving and caring.  However, I obviously expect too much.

Regardless... I am going to continue to be kind and giving and loving and caring to those who are the same to me.  Should I be the "bigger person" and act that way toward everyone regardless of how they treat me.  I guess so.  But that's not how I roll.  If you are there for me, especially during the important times in my life (good or bad) then I will do anything for you.  I am NOT, however, one of those people who can love and care for someone, give them pieces of myself, and open myself up to them to only have them not return the feelings.  After everything this disease has taken out of me, I don't have enough pieces of myself left to give them out freely to people who don't return it.

Last Saturday, at the walk, I had a smile on my face just about the entire time.  There are lots of reasons for that but I'll just discuss one right now because it's fitting.  I absolutely LOVED being around other people who are dealing with Mitochondrial Disease in one way or another (suffering from it themselves or caring for a family member suffering from it).  I was not alone.  In fact, far from it.  It wasn't just being around others with chronic illness.  These people know almost exactly what I'm going through and vice versa.  Considering the fact that the large majority of people in my life do not know what I go through on a daily basis or how I feel when I'm real sick, it's so nice to be around people who do.

Because of the walk I have met a lot of great people in the mito community.  One of the people I met is the mother of an adorable little boy who has mito.  We have been facebook friends for awhile but never really talked or met in person.  I invited her to the fundraiser party 3 weeks prior to the walk and, to my surprise, she came and even brought her son.  I was so thrilled to finally be able to meet her and her son.

With us being facebook friends, she saw that I was in the hospital a week before the walk.  On the day of, her and her family/team stopped to talk to me and introduce me to her husband.  Once again, so glad she did.  Partly through the walk I was told that there was a family stopped on the side of the walk route.  I went to check it out and make sure everyone was okay when I saw that it was her.  She let me know that they were just stopping to check on her son.  She then informed me that she was worried about me being at the walk.  She said she couldn't believe I was there and doing everything I was doing with the fact that I had just gotten out of the hospital a week prior.  SHE was worried about ME!  Really?  Even my own friends and family were not worried about me (except for my parents and husband... that's almost always a given when I'm talking about family & friends who don't do this, that, or the other).  It really touched my heart to hear that she was concerned about me, what I was doing, and that it was going to make me really sick again and/or put me back in the hospital.

I have come to the conclusion that I need to try to get together with the "mito community" more often.  I think I will be reaching out to others to see if they want to meet more often than once a year at the Energy for Life walk.  It just seems as though they would understand and be more sympathetic to my situation and how sick I am.  Obviously having "well" friends does not work well for me.  (ha!  no pun intended... it just came out that way.)

We will just have to see what the next few weeks/months brings.  Will I move on like I've been wanting to do for awhile now and try to find/make new friends... friends who understand me?  Or will I dwell on the past and continue to put up with friends who clearly don't have room for me in their thoughts, hearts, and lives?


Wednesday, September 19, 2012

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” 
  1. Mitochondria are the “powerhouse” of the cell. They combine oxygen from the air we breathe with the calories from food to produce energy. 
  1. 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. 
  1. 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.  
  1. 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. 
  1. 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. 
  1. Mitochondrial disease can affect any organ of the body and at any age. Symptoms are extremely diverse. 
  1. 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.
  1. The United Mitochondrial Disease Foundation is the largest private donor of funds for peer-reviewed research. It has provided nearly $10 million in research. 
  1. There are no effective treatments to date for mitochondrial diseases. 
  1. There is no cure for mitochondrial disease – yet. Research offers the best hope for the thousands afflicted with this debilitating disease. 
  1. Mitochondrial disease is caused by the body’s inability to produce energy. Symptoms and stages of the disease vary. 
  1. There is no cure for mitochondrial disease.  It affects both adults and children and can be fatal. 
  1. Mitochondrial dysfunction is linked Parkinson’s, Alzheimer’s, Diabetes, some forms of Autism and some cancers.     
  1. 1 in every 2000 babies born will develop a mitochondrial disease.   
  1. We all have mitochondria - they help us all breathe, speak, hear, talk, and walk. 
  1. Your participation in this walk helps The UMDF remain the largest non-governmental contributor of research towards a cure. 
  1. There are no effective treatments for people suffering from mitochondrial disease. 
  1. $.86 of every dollar raised is used for programs, education and research to benefit mitochondrial disease patients. 
  1. 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.



Tuesday, September 18, 2012

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.....



Monday, September 17, 2012

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.


Tuesday, September 11, 2012

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!!!!!!!!!!!