Thursday, September 22, 2011

What Mitochondrial Disease Means to Me, Part 4

So, since I have already posted today, and I'm really not even feeling like typing, or doing anything for that matter, I'm just going to do a short post this time.

A large part of mitochondrial disease, or any chronic disease for that matter, is the costs involved.  A fellow mitovian (someone suffering from mitochondrial disease) wrote a post in her blog about this topic.  She did a great job, so I wanted to share it.  It fits real well with my theme of this week for my blog, mito awareness.  So please take a minute to read her post.

http://mitofamilies.blogspot.com/2011/09/financial-reality-of-mito.html

So, instead of typing a few paragraphs about one symptom, or a set of symptoms that fit together, I'm going to write a list of every little symptom I have due to mitochondrial disease and dysautonomia/POTS.  I experience many, if not all, of these symptoms every day.

Extreme fatigue
Muscle weakness
Muscle pain (24 hours a day, 7 days a week; made worse with activity)
Tinnitus (ringing in the ears)
Muscle spasms
Hot flashes
Extreme sweating during the day; night sweats at night
Heat intolerance
Cold intolerance
Increased heart rate with standing/activity
Shortness of breath (especially with activity)
Inability to stand for more than a few minutes at a time (standing longer would cause many of the symptoms listed here, including nausea, tremulousness, elevated heart rate, shortness of breath, and more)
Exercise Intolerance
Nausea
Constipation
Abdominal pain
Difficulty passing stools
Headaches
Migraines
Short term memory loss
Difficulty finding words or inability to think of the words I'm trying to say
Dysmotility - causing the nausea and constipation listed above
Acid reflux
Tremulousness (shaky, especially in the hands)
Irregular heartbeat/rhythm (symptomatic PVCs)
Blurred vision
Bruising easily
Slow recovery from illnesses
Mood changes (depression, irritability, etc.)
Poor balance

Unfortunately, I'm sure there's more but I'm struggling to keep my eyes open so my brain is probably already asleep.  However, I've listed 30 of my symptoms for you.  I hope that will help you better understand mito, why it is such a serious disease, and how I feel on a daily basis.

If you want to learn more, go to www.umdf.org

Now for a few videos.  The UMDF had a contest for the best video for spreading awareness for Mito awareness week this year.  Here are the top three videos, starting with the 3rd place winner, then the 2nd place winner, and then the overall winner.  As always, I'm begging you to increase your awareness and watch these videos.




2011 Awareness Week Video 5 from UMDF on Vimeo.



2011 Awareness Week Video 3 from UMDF on Vimeo.
I met Kenadee's parents at the UMDF symposium.  What a nice couple!  As always, they do not deserve this, and neither does Kenadee.  They are in my thoughts often.  Kenadee is SO precious!  I wish her and her family the best.



2011 Awareness Week Video 7 from UMDF on Vimeo.

I just met this little boy's mom on Facebook this week.  Another great person.  Her 2 1/2 year old daughter is in the process of getting diagnosed with mito now.   We also connected because she understands my disappointment in people and is there as well.  That is one of the many reasons why I write my blog.  Kristi knows that she is not alone in her feelings and now I know I'm not the only one who is dealing with that as well.  Thank you, Kristi, for reading and reminding me that I'm not alone in this world.  Congrats, Kristi, on winning the video contest.

Congrats to the winners of the UMDF video contest!  They were all great videos.

As always, thanks for reading, everybody.  My eyelids are now winning the battle.  Good night.

3 comments:

babyfoodsteps said...

Thank for continuing to spread awareness and let others know they are not alone in this fight!

Dirty Butter said...

I've just been dx with Mitochondrial Myopathy and doing a search for other adults with Mitochondrial Diseases. I'm added you to my sidebar on Day by Day with a Movement Disorder.

Smoo99 said...

I share a majority of your symptoms with a few more of my own. I've been ill for over 15 years and though mito is suspected its not definite. Thank god my kids were grown before I got this ill, and thank god for my wonderful patient husband. Best of luck to you.