It finally hit

Well, I can't sleep, so I guess I'll blog.  And I guess I'll blog about why I can't sleep.

A few people were noticing how well I was taking my diagnosis.  My daughter was especially annoyed at how well I was taking it.  I was, in fact, happy that I finally got a diagnosis.  After a year and a half of searching, with doctors, family, and friends not believing me, no treatment options, and the constant feeling that I knew something was wrong but no one else did, I was ecstatic that I could finally put a name to my illness.  I was ready to make plans.  I was ready to start treatment.  I was ready to finally be able to say "I have mitochondrial disease" when people ask what's wrong with me, instead of giving them a long story about how I was diagnosed with POTS, but I know something else is wrong but have yet to find out what it is.

I had a feeling that the severity of my diagnosis, what it really means to have mitochondrial disease, would hit me at some point in time.  Well, last Thursday, it did.  I was taking my rest time and laying in bed with my eyes closed, listening to relaxing music.  I started thinking about how wonderful everyone has been recently.  How grateful I am for everyone's help recently.  And then, something happened that is typical for me, I started thinking how I am going to pay everyone back by helping them with things, when I get better.  Then it dawned on me.  I'm not going to get better.  This isn't an illness that goes away.  There is no cure and the treatment is minimal, if it works at all.  That would be when it hit me.  I started crying... and I didn't stop for 45 minutes.  Luckily I have a wonderful husband that I could talk to on the phone who helped calm me down and an even more wonderful mom who came over and kidnapped me to take me for ice cream (after a few long hugs and reassuring words).

Unfortunately, though, I have still been struggling a bit with my emotions.  Since then, I have had trouble sleeping.  Hence, this late night post (it's almost 1am btw).  I will explain what I mean by the "severity of my diagnosis."  In the seconds that it had finally hit me, this is what I was thinking...  I will never be an ER nurse again.  I LOVED my job.  I loved being a nurse.  I also like making my own money.  I have always been a very independent person.  I hate relying on other people.  And now, not only am I going to have to rely on other people financially (I count disability as "other people"), but physically as well.  I hate having to constantly ask everyone for help.  Now I'm going to have to do so for the rest of my life.  I had finally figured out what my passions were; running and hiking in the mountains (yes, I only did it once, but I was hooked immediately).  I will not be able to do those things anymore.  This is not how I planned my life.  I have too many things to do with my life to be sick.  I am too independent to have to rely on other people to help me with things all the time.

Yes, all of that went through my head in a few seconds. 

Now, I know what everyone is thinking and, therefore, wanting to say to me.  "Robin, you'll find other things you're passionate about. You'll find ways to adjust so you don't need help from others as much.  You'll get better one day.  These vitamins are going to help you.  We're your family, we don't mind helping you.  Etc. Etc. Etc."  I know, because I have heard all of these things.  I know that everyone has good intentions and just want to help.  I will be okay with it again soon.  But for right now, I am mourning the loss of the old me, my old life.  Hopefully it will be a quick process since I've kind of already gone through the grieving process over the last year.  I have had the symptoms of mito for awhile now, and therefore lost my old life awhile ago.  However, I have just now found out that it's never coming back.  So, give me some time.

Questions for my fans

Well, it looks like I need a new name for my blog.  Granted, I still have dysautonomia (pots), but my primary illness is mitochondrial disease.  Here I was being so clever with my blog name.  I even came up with it all by myself! Aren't you so proud of me?  Yeah, I know, it's the little things I get excited about.  So, anyway, I need a new name.  What do you think?  I can't think of anything clever.  And I'm just not into boring names.  I need something different.

I have started taking rest periods everyday.  Dr. Shoffner stated that I should  take 4-5, 30 minute rest periods daily.  You're probably thinking, "why do you need rest periods if you are in bed or on the couch all day everyday".  Well, 95% of the energy we need comes from our mitochondria.  That includes our cognitive activities as well.  So, all this time I thought I was resting and conserving energy, I really wasn't.  Even when I'm "resting" in bed and on the couch I am always reading, playing computer games (damn addictive Farmville), watching TV, or a combination of all three.  So I am slowly working into actually resting 4 to 5 times a day.  For my rest period, I go into my bedroom, close the blinds, turn off the light, lay down in bed, and listen to relaxing music on my ipod.  The music I have been listening to is relaxing nature sounds and music.  A few years ago my aunt gave me a couple of cds by Dean Evenson.  I put them on my ipod for my rest periods and I thoroughly enjoy it.  It really helps me relax.  It reminds me of getting a massage. Oh, how I would love a massage right now.

The cds I have on my ipod are...
Dean Evenson - Healing Waters
Dean Evenson - Tao of Healing
Dan Gibson - Harmony

Now the other thing I need your help with.  Does anyone have any recommendations for more relaxing music?  I don't want singing.  I love nature sounds, by themselves or with music.  I do like what I have but I have a feeling that I will get sick of listening to the same thing 3-5 times a day quite quickly.

This is the kind of yoga I DON'T want to do.

I am going to try to start stretching daily.  When I was exercising on an almost daily basis, I would do yoga once a week.  I thought that might be an option for me to help with relaxation, stretching, and light exercise (stretching is exercise for me now).  But I remember the yoga I used to do was not that easy.  I would break out into a sweat and I was in awesome shape at the time.  Anyone know of a yoga program (DVD) that is not at all strenuous that would help me with stretching on a daily basis?  Sometimes it's easier for me to stick to something if I have a program to stick to, not just my basic stretches.



If you have mito, how did you find a doctor in your area that specializes in mito?

Okay, that's the last question.  Please comment if you have any recommendations or advice regarding the above topics.

For you not-so-internet-savvy people...

How to post a comment -  At the bottom of this post (and all posts) there will be something that says "posted by Robin at 00:00pm    0 Comments".  It will, however, state the time I posted it and the number of comments there actually are.  If you want to leave a comment, click on the red words "0 Comments".  That will take you to the comment page. You can type your comment in the box and then you must choose whether you want to use your Google account to identify yourself, just your name, or leave it anonymously.  Then just click "Publish Your Comment".

How to become one of my fans (followers) -  I LOVE having followers.  It shows me that people actually read my blog.  So, if you read on a regular basis, become a follower.  All the cool people are doing it.  You know you want to.  Since everyone else is doing it (yes, 11 people is everyone), click on the small "button" labeled "Follow".  This will give you a pop-up screen asking you to sign in with an account you already have (google, yahoo, twitter, or aim) or create a new account.  If you don't already have an account with one of those providers I listed, it only takes 30 seconds to create a google account.  Just Do It!!!

Information about Mitochondrial Disease

Since I'm not an expert on mitochondrial disease, I'm not the best person to explain exactly what it is.  However, I know that many of you are interested in knowing what it is and how it will affect me and my life.  I have posted multiple links to websites that are excellent at explaining mitochondrial disease.   It may require a bit of reading however.

Both of the links below are from www.MitoAction.org, a website that helps raise awareness and provides support and education for people with mito.

How Energy is Made and Mito - there is a great video on this page that explains mitochondria in a healthy person and mitochondria in someone with mitochondrial disease. It also shows what it means when people with mitochondrial disease have a defect in Complex 1 and 3 (such as myself), or any other other complexes up to 5.

Information about Mito - more medical terms - Discusses what mitochondrial disease is, symptoms, cause, prognosis, etc.

Living with Mito - great video about people living with mitochondrial disease.

There is a LOT of useful information on MitoAction's website. The above are just a few links from their website. Browse around their website and see what you can find.


The United Mitochondrial Disease Foundation is another source of information and support.
UMDF

What is Mitochondrial Disease

Types of Mitochondrial Disease - I have Complex I Deficiency and Complex III Deficiency. As you can see, there are over 40 different types, all of which present in different ways. However, the doctor told me that another 32 year-old woman with complex I and III deficiencies could have completely different symptoms than I do.

Discussion of treatments and therapies - also discusses things to avoid, including physiologic "stress" (bottom of the page).

As with MitoAction's website, UMDF's website also has a lot of useful information that I didn't link to above.  Browse around and see what you can find.

Muscular Dystrophy Association - Because mitochondrial disease is considered a metabolic disease of muscles, it is one of the diseases "covered" by MDA. I'm a Jerry's kid!!! They have a decent amount of information about mito as well.

Thanks for reading up on my disease.  I want to raise awareness as much as possible.  I especially appreciate my family and friends educating themselves about mito, so they know what I am going through and why.

Answers, Finally. part 2

I will be adjusting my activity levels according to my symptoms.  I should not stay 100% sedentary (bed ridden), but I have to be very careful that I do not over do it.  I have to do a small amount of activity followed by a larger period of rest.  I may increase my activity levels, but it must be done in baby steps.  And I really mean baby steps.  Look at it this way.  If I currently walk an 1/8th of a mile 3 times a week, I need to continue to do so for three months.  At that time I can increase to 1/4th of a mile.  That may even be too much.  If my symptoms indicate that I have done too much, then I need to go back down to 1/8th of a mile again or maybe a slight bit more.  I would then have to wait another 3 months before I increase it again.  This analogy was given to me by the doctor.  I was pleased because, as someone who has trained for multiple races, increasing my mileage weekly, I could understand it very well. 

So, I have signed up for a 5K in 2017.  Okay, not really.  In fact, I will not ever be able to do things that require energy for long amounts of time anymore.  Looks like I'll just have to volunteer to help at those races now, instead of running them.

There is a couple of problems with mitochondrial disease in regard to finding a cure and/or treatment.  First of all, it is a rare disease.  Most doctors don't know anything about it.  There are only a handful that actually specialize in it.  The other problem is that there are 1400 different genes that they have found that cause mitochondrial disease.  If you are diagnosed with another type of genetic disorder, (the doctor used cystic fibrosis as an example) it is caused by the game gene as everyone else who has that disorder.  However, there are so many genes that cause mitochondrial disease that it is difficult to find a treatment that would help everyone with the disease.

Dr. Shoffner does a LOT of research for mitochondrial disease (sometimes termed "mito").  He stated that they are advancing fairly rapidly (rapidly for the medical research community at least) in creating a medication to help patients with mitochondrial disease with their symptoms.  So all I can do is hold out hope that better treatments will be discovered in years to come as research is done.

I will be adjusting my diet as well.  I need to eat approximately every 2 hours, even if I'm not hungry.  If I'm hungry, I've waited too long, which I have already discovered before the doctor had told me that.  I need to make sure I'm eating complex carbohydrates and not simple carbohydrates.  I will be doing more research on my diet.  I also hope to see a dietitian in the near future.  Dr. Shoffner said that they are hopefully going to have one on staff there in the future.

While I was in Atlanta, I had more blood drawn and I also had another cardio-pulmonary stress test.  He wants to see how I have progressed, whether for the better or worse, since my last appointment and stress test.   I don't know what tests he is doing with the blood he had drawn.

One of my big questions was whether I need to worry about my two daughters having mitochondrial disease, since it is genetic.  He said that we will go over that the next time I see him.  Between now and then he will be doing genetic testing on my blood and/or muscle tissue which will enable him to discuss this with me.

All in all, I am pleased.  Yes, I have just been told that I have a life altering disease in which there is no cure.  However, I have been trying to figure out what exactly is wrong with me (other than the obvious mental issues), for a year and a half.  My life has been on hold.  I've been waiting to find out what is wrong with me so I can make it better and get back to work, life, etc.  Now that I know what I'm dealing with, I can do just that, deal with it.  I may not be able to go back to work as an ER nurse, but now, with this diagnosis, I should almost definitely receive disability.  Almost definitely.  I think that's an oxymoron.   Anyway...  I may not be able to run a 5K, but I can volunteer to help with one that raises money for mito research.  Now that I know what I'm dealing with, I can make plans to adjust my life accordingly.

Answers, Finally

This post will probably be a "To be continued..." post.  I am well into the negatives with my spoons right now.  However, I wanted to update everyone as soon as possible.  So instead of typing for a little bit, saving it, typing more, saving it, and then posting it when I finally finish, I will just post  when I type it and then post more later.

I have been diagnosed with mitochondrial disease.  Alright, let me know if you have any questions.  Talk to you soon.


Ok, just kidding.  I'll elaborate.  Mitochondrial disease is a rare genetic disorder that affects the mitochondrial in the cells of the body.  Since the whole body consists of cells, this disease can affect every organ system in the body.  However, there is a wide spectrum of mitochondrial diseases ranging in severity.  On one hand, multiple organ systems are involved, symptoms begin at an early age (childhood), and life-span is shortened.  On the other hand, someone can have very little symptoms, no adjustment in life-span, and live a normal life.   I am somewhere in between.  Dr. Shoffner stated that if I take care of myself, this will not have an affect on the length of my life.

However, there is no cure for mitochondrial disease and there really isn't a good treatment.  At this time, the treatment consists of CO-Q10, Riboflavin, and L-carnitine.  These are all over the counter "medications"/vitamins.  On some individuals these things work well to decrease symptoms.  On others (most) it does very little, but may help with long term health.

To be continued...