What does sick look like?

There is a lot of discussion regarding people who are chronically ill "looking" sick.  People who aren't sick tell us that we don't look sick all the time.  I hear from people with POTS/dysautonomia, mitochondrial disease, and others who're disabled from different medical problems that they have heard that statement.  We get looks when parking in handicapped parking.  We have problems getting disability.  We have difficulty getting support from family and friends.

That leads me to one question...

What, exactly, does sick look like? 

This is my favorite

Does someone with diabetes look sick?  They have a lot to deal with everyday.  If they don't take their insulin at the right time, eat the right foods, take too much insulin, take too little insulin, exercise too much, etc. they can wind up in the hospital.  But by looking at someone with diabetes, can you tell?  They may have an insulin pump or scars from all of the needle sticks but you can't see those things if they're dressed.  Are they sick?


Does someone with congestive heart failure (CHF) look sick?  They get short of breath with activity and can have swelling in their legs and feet. They could go into the hospital at any minute. But by looking at someone with CHF, can you tell?  While clothed you can't see the swelling and you can't "see" shortness of breath.  Are they sick?

What about Multiple Sclerosis?  People with MS can have a wide array of symptoms, many of which occur in mito as well.  They, many times, have to use a wheelchair to get around.  But, without the wheelchair (or even with the w/c), can you tell?  Can you see the pain, numbness, and tingling?  Can you see the bowel and bladder problems?  The muscle weakness?  Are they sick?


And how about Mitochondrial Disease?  People with mito have a wide array of symptoms, just like those with MS.  We have extreme fatigue, muscle weakness and pain (many times severe), slow or no GI motility (movement), problems with vision or hearing, failure of the autonomic nervous system (which causes a wide array of symptoms itself), and many more.  Many of us have to use a wheelchair to get around, at least if we want to get very far we do. (I'm included in that group.)

...and a lot of alcohol and some acting
classes and I'll be sick for the next
2 days.

Due to my illness I have a port a cath for IV fluids and an intrathecal pain pump implanted in my back, both of which stick out and are visible when I don't have a shirt on. I have a scar of my leg from the muscle biopsy, two large ones on my back from the pain pump, and a small one above the port.  I also use a wheelchair to get around. In addition to all of that, many people with mito have a G/J tube (feeding tube).  Aside from the wheelchair, none of those things can be seen with my clothes on.  Anyone with Mitochondrial Disease could get ill and be in the hospital any minute.  But by looking at someone with mito, can you tell?  (Evidently not since I've been told many times that I don't look sick, despite using a wheelchair.)  Are we sick?

So, if none of the people with diseases mentioned above look sick, what exactly does sick look like?  If you're sick does that mean you always look pale?  Do you have to be missing your hair?  Do your eyes have to be sunken in with dark circles underneath?  Do you have to be emaciated?  Do sick people have to frown and look miserable ALL the time?  Do you have to be so sick that you can't get out of bed 100% of the time?

I've felt this way before.

If the answers to those questions are all "yes", then that means that you're only sick if you are actively dying or going through severe chemo and radiation due to stage 4 cancer.  If neither of those are true, then you must not be sick because you don't look that way.


Everyone needs to learn that it is almost insulting to say "You don't look sick" to someone who is sick and feels sick every day of the week.


And in case you need a reminder of the other things not to say to someone with a chronic illness...

You'd be surprised how many times I've heard these statements or something similar.

Sorry for all the pictures... I just couldn't choose.  :-)

I'm back... kind of.

Well, after a LOT of thought and consideration, I have decided to start posting on my blog again.  However, things are going to change a little, as I have changed... a lot.  Many of my posts were there to update people (friends and family) of my condition.  However, as I have learned that people's love is, many times, conditional and sometimes faked, I will no longer be posting to update anyone on my current condition.  The people who really care, will find out because they live with me or talk to me regularly.  They can just ask me in person.  Now, there will, of course, be discussion about how I'm feeling or the ways this disease is affecting me.  That's what this blog is all about.  However, I will not post for the sole purpose of updating people.

On the other hand, many of my posts have been written and posted for the purpose of educating others about Mitochondrial Disease, dysautonomia/POTS, and the ways those diseases affect me.  That is the reason why I'm going to blog again.  I have had quite a few people email me or comment on my blog saying that it has helped them over the last couple of years.  The other day I came across one of my blog posts on Pinterest. (and no, it wasn't someone I know)  I think that's what made me finally decide to start posting again, after going back and forth about it for the past month.  I am not going to let a few former family members words keep me from helping others.

Unfortunately, I've had to make another change.  Awhile back I changed my comments settings so that I moderated them before they could be posted.  However, I've learned that that's not enough.  A former family member was using the anonymity of the internet to say unsupportive and hurtful things to me.  So, because of that person, I have had to disable the ability to post anonymously.  Because she is too cowardly to say those things to my face or even just using her name on the internet, I believe that those comments will stop if I disable the anonymous posting.  I cannot and will not deal with someone being unsupportive and hurtful.  So, I am sorry that everyone else has to deal with signing up for a service they might not want to sign up for since I'm not allowing anonymous posting.  It's another case of one person ruining it for everyone else.

So, welcome, or welcome back.  I hope everyone's having a good, spoon-filled day.  If not, I understand and I hope you have a good day soon.  

My Last Blog Post

This is my last blog/facebook post.

I have finally hit rock bottom.  I’m done.  I can’t do it anymore.  I have been holding myself up by a thread for a very long time and that thread finally broke earlier this week. 

Am I going to leave this world by my own hands?  No.  There are 3 people in this world who would be greatly affected if that were to happen, my husband and my two daughters.  That is the reason, the only reason, why that will not happen.

However, I don’t have it in me anymore to continue fighting.  I have been fighting for 3 and a half years now and it has gotten me nowhere.

No one has any idea how hard it is to live, day in and day out, feeling physically and mentally horrible.  I have to fight to get out of bed.  I have to fight to have relationships with friends and family.  I have to fight to care for my children.  I have to fight to be a good mom, wife, friend, daughter, cousin, etc. I have to fight to keep the tears away everyday and put a smile on my face for everyone else to see.  It takes twice as much energy as it ever did when I was healthy just to live my life.  Every day is a fight and I can’t do it anymore. 

I try and try and try but no one but me sees that.  If they do, I wouldn’t know because the only things I hear about are the negative things I do.  (Except for the occasion facebook friend that I’ve never met in my life giving me praise.)

I have tried to ignore how miserable I am.  I have tried to be positive since that’s what everyone thinks I need to do.  I put on a fake smile and act like everything’s okay… like I’m okay.  I pretend that I don’t hate my body because of the way I feel and now look.  I pretend that I’m okay with being fat since “it’s not my fault since I can’t exercise in any way (even a walk around the block)”.  It IS my fault.  I eat like crap.  Why?  Because I am miserable… physically AND mentally.  That smile on my face is fake.  I can count on one hand, and still have fingers left over, the number of days I’ve been genuinely happy in the last 3 ½ years. Any other time there’s a smile on my face it’s all an act. My husband has told me I should win an Oscar since he’s the only one who can even come close to knowing how I actually feel.

I have tried to find things to do to make me happy.  I have tried to make my life worthwhile.  As a nurse I loved to help people.  I still do.  That’s why I still try to help others all the time.  That’s also why I have spent hundreds upon hundreds of hours, no matter how horrible I felt, trying to raise money for the charity UMDF.  Would it benefit me if they found a treatment/cure?  Sure.  But I’m always thinking about all of those children and others who are suffering from this disease more than I am, or those parents who have lost a child to Mitochondrial Disease.  Since my diagnosis, I have raised over $15K for UMDF.  That doesn’t count the fact that I planned the charity walk with little help last year but still raised over $47K ($20K more than what was raised the previous year).  This year alone I have planned and will implement 4 different fundraisers. I also tried starting a business by selling my homemade jewelry.  I even donated 20% of my proceeds to UMDF, despite the fact that my husband and I need the money for medical bills, medicines, etc.   All of that while dealing with a disease that makes me feel physically and mentally ill on a daily basis, with more bad days than good.  But none of that matters.

I have tried to improve relationships with friends, family, etc. since one of the biggest problems I’ve had since I got sick is relationships with others.  I quit talking about my disease and how I feel because I didn’t think others wanted to hear it.  I make myself sick to help other people in their lives.  I do things that I don’t feel well enough to do so that I don’t have to bother others for their help. 

I didn’t start out this way.  However, over time I thought that maybe the lack of support was because of me… something I was doing.  So I changed.  I tried my best to pretend that I wasn’t sick.  I thought, “I can’t change everyone else, so I’ll change myself to make things better.”  I thought that maybe if I treated everyone the way I would want to be treated that I would get the same in return.  Maybe if I go out of my way to help others, despite needing help myself, then others would be there for me.  You know the old saying, “treat others the way you would like to be treated.”

I was having difficulty getting support from friends and some of them (anonymously via my blog) blamed it on me.  So I took it to heart.  I decided that I would concentrate on becoming a better friend myself.  My friends were rarely contacting me so I decided to contact them all the time, no matter how much that hurt my self esteem.  My friends weren’t coming around to help or support me, so I tried harder to do so for them (new and old).  I even made a new friend around that same time.  I went above and beyond for this person thinking that maybe it was just too late for the others.  That I had done something (I never knew what, though) to make my friends not want to be there for me.

None of it mattered.  No matter what I’ve done, nothing changed.  I have lost 3-4 friends since I decided to change the way I did things.  Two of which I just stopped trying and I, therefore, never heard from them again.  The third, I let her know that I couldn’t keep going through a one sided friendship.  That’s the friendship that I put my all into.  I ignored how I felt in order to make sure I was a good friend for her but never felt love or support in return.  I just couldn’t keep doing it anymore.

That’s just my friends.  Then there’s family.  Oh, lovely family.  You know… the people who are supposed to always be there for you when times are tough… the people who are supposed to be there for you when no one else is.  Well, in my family that’s a crock of shit.

I go months without seeing most members of my family.  Many of them would go 6 or more months without even asking how I’m doing if I didn’t initiate the conversation.  I’m not even talking about how long many of them go without helping.

Don’t get me wrong, there are many family members who do help.  However, I have learned that for some of them, close ones, that help is conditional and will most likely be used against me at one time or another. 

I do not want help from anyone.  I never have.  Unfortunately, we have needed it.

However, from now on, we will very rarely be accepting help.  I have learned that even those who I think are helping for the right reasons are not… that the help that we’ve received will only be held over our heads later.    

I do NOT want help from anyone, anymore.  We will find a way to do it on our own.  If receiving help from people means that I am then expected to be a doormat and let that person treat me however they please, I’ll pass.  Whether I do well or not without their help, I don’t care.  I do not want to ask for help and I especially do not want it if it’s conditional.

Recently I have decided to stand up for myself.  I was tired of always being a doormat so that people would be there for me.  Especially since nothing had changed.  No matter how good of a person I tried to be, it wasn’t good enough.   Evidently since I have received help from others I have to bend over and take whatever they want to give to me.   I’m not allowed to say something wrong, even if I admit it later and take it back.  I’m not allowed to be in a bad mood, you know, since I feel so wonderful all the time and my life is exactly what I want it to be.  If I receive help from family and/or friends, I have to be the nicest person in the world and never stand up for what I believe in because that might upset the people who have helped me.

Well, standing up for myself, as I’m sure you’ve guessed, has only caused me more problems.  That’s how I found out that much of the help I’ve received in conditional.  Of course, it was all done with love, but it’s conditional none-the-less.

I’ve been blamed for being heartless and uncaring.  I’ve been told that I shouldn’t be mad at people who have helped me.  I’ve been accused of being after people for their money (despite the fact that 100% of the money that I have received or would have received from that person went to charity).

I’ve learned that it’s all my fault.  It’s all me.  I’M the problem.  I should never have stood up for myself or my kids.  I should never be upset when people who I think care about me do something to hurt me, whether it's once or over and over and over again.

I’m sorry for doing everything I’ve ever done.  I’m sorry for standing up for myself, my kids, and the things I believe in.  I’m sorry for needing and accepting help.  I’m sorry for not letting people treat me however they want.  I’m sorry for being in a pissy mood 25% of the time that I should be in a pissy mood.  I’m sorry for being upset when people shit on me.  I’m sorry for needing help and support.  I’m sorry for accepting help.  I’m sorry for not being positive all the time.  I’m sorry for not being a better person.  I’m sorry for becoming fat and unattractive.  I’m sorry for not handling my shitty life the way others think I should.  Mostly, I’m just sorry for being me.

However, I’m sure the entire paragraph above will not show up because I never say I’m sorry.  I never admit that I’m wrong.

I will not leave this world on my own accord, no matter how much I want to.  I will not do that to my children or my husband, the 3 people who I believe love me unconditionally. Maybe my kids would be better off without me since I’m a shitty mother, but this is the decision I’m making for now. However, in the amount of time that I have left on this earth, which will not be until I’m old and grey because of my disease, I will no longer be trying to have or maintain relationships with people, try to help people, raise money for charities, or try to make myself a better person. I will live, day in and day out, just going through the motions.  I don’t have the energy or desire to do anything else anymore. 

(I have made a commitment to co-chair this year’s EFL walk and I will follow through on that commitment.  However, I will not be doing anything for my own team anymore.   If people truly want to donate and/or walk, they will do it without me hounding them constantly to do so.  I won’t be holding my breath for that anymore.)

FYI…  This post is directed at no one particular person.  This post is directed at everyone in my life.  There are many different people and situations that I refer to in this post.  If you feel like you’re one of them, you probably are.  I am also not posting this for attention as I will not be reading comments, texts, emails, etc. anyway.  So do not bother.  This post is not intended to start/continue drama.  This post is for informational purposes only for those who give a shit or want to continue pretending to give a shit, as they have for many years.  So if you don’t hear from me, or hear back from me, you now know why.

The Ring Theory

I was browsing facebook today and came across a post from a facebook friend of mine who also has Mitochondrial Disease.  She has a daughter with the disease as well.  We have talked many times and I really look up to her for how well she handles everything that she has to deal with.  I know I have a very difficult time with my disease and the effects it has on my life and the lives of my family.  However, she has to deal with twice as much since she's not the only one sick and in a wheelchair, her daughter is as well.  She is frequently posting things on facebook that she has read that are very insightful.  This is one of those times.

I'd like everyone who reads my blog to read this article - http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

We've all heard of the spoon theory by now.  This article discusses the Ring Theory.  The spoon theory is all about energy and how it's used.  The ring theory is about what we say to other people who are going through a difficult time.  Everyone needs to read the article and take its advice, some more than others.

Why am I even doing this?

Well, I haven't fallen off the face of the earth.  I have wanted to many times in the last couple of months, but, regardless, I'm still here.  It's been 6 weeks since my last blog post.  No, I haven't been too sick to post.  I haven't been too busy to post.  It's not that I haven't had anything to say either.  Honestly, I just haven't felt like it.  Every time I've thought about posting something that's on my mind I've thought, "why bother?"

To be honest, I haven't been myself in the last couple of months.  Of course, one could say that I haven't been myself in the last 3 1/2 years (in case you can't put two and two together that's how long I've been sick).  However, in the last couple of months I haven't even been the new, non-improved, me.  I have gone in and out of the various stages of grief since I became ill.  Depression has, of course, been the prominent one.

Just 7 or 8 months ago, maybe more, I had finally hit acceptance.  I was finally settling into my new life with mito.  I had realized that this is my life and it always will be, no matter what I do.  I was caring about my looks again and wearing make-up on a regular basis.  I was scheduling dates with my husband and going shopping for some nicer clothes.  I was also working on getting my jewelry business up and running.

Unfortunately, that all changed.  Was it something drastic?  No.  It was a slow process.  I know that the death of my grandfather had a big impact on me.  However, that's not the definitive reason why I am now depressed.  I can't give you a definitive reason.  Maybe it's because I'm sick and tired of being sick and tired.  Maybe it's because I'm in pain all the time and it never goes away.  Maybe it's because my support system is getting smaller and smaller and has practically disappeared over the years.  Most likely it's all of the above.

I can tell you that the one thing that bothers me the most, as always, is the lack of support, friends, etc.  I know, I know.  I sound like a broken record.  That is the main reason why I haven't posted.  I'm sure everyone's tired of hearing me talk about my lack of support, friends/family that aren't there for me, and how lonely I am.  That's why I've chosen not to post.  I always post what's on my mind and that's been the majority of what's on my mind over the last couple of months.  So if you're tired of listening to the broken record, stop reading now.

The one thing I need more anything right now is someone to come tell me it'll all be okay... someone to hug me and tell me that they're there for me... someone to call me more often than once every couple of months to ask me how I'm doing.  It all boils down to needing to feel loved and cared about.  That's something I haven't felt much of recently.  And that fact has put me into the downward spiral of depression that I'm in right now.

Not only have I not had what I mentioned above, I've had the exact opposite.  Just a couple of weeks ago I was hurt, badly, by someone with whom I trusted more than all but one other person in this world.  The things that were said to me were extremely hurtful.  It will take a lot to mend the relationship back to where it was originally.  And, like I said, this was someone that I trusted.  Someone with whom I never would've thought would hurt me and say things like that to me.  But, it is what it is and I must now deal with one less close relationship in my life.

Maybe the lack of close relationships (friends or family) is my fault.  Trust me, I'm aware of that.  What I'm not aware of, however, is what I am doing to make people not want to be around me.  Is it because I'm not positive all the time?  Is it because the only thing I am able to do most of the time is hang out at my house and, therefore, cannot come to other people's houses, go out to eat, or go to a bar?  Is it because I'm not fun to be around anymore?  Is it because I'm irritable and cranky a decent amount of time?  Is it because I'm no longer beautiful since I'm fat now so people don't want to be seen with me?  Or is it because I expect too much out of my friends and family?

You know, being ill 24/7 is SOOOO much more difficult than people can even imagine.  So, no, I'm not positive all the time.  It's easier to be positive when you know people care about you.... and show it.  I can't help the fact that I have to spend most of my time at my house.  I want, more than anything, to go out with friends to do things or to go to their house instead of mine.  However, I want to have the support of friends/family without it making me sick in return.

I admit that I am not as fun to be around as I used to be (especially recently since I've been so depressed, but not many people know what I've been like recently).  I know that I am cranky and irritable many times.  I try my hardest to not be that way even when I'm in horrible pain, nauseous, too weak to lift my arms or legs, extremely fatigued or all of the above.  Most people wouldn't be able to put on the act that I put on for others when I'm feeling bad.  If people think I'm cranky or irritable now, they should see how I would act if I didn't try to hide it.  I'm gathering that no one thinks about how I must be feeling when I'm being irritable.  People just immediately think that I'm just a bitch because that's who I am or take it personally.

Lastly... do I expect too much out of my friends and family?  (This is the big one.)  Is it too much to ask that I want to hear from my friends (in any way - text, email, phone call) at least once every couple of weeks?  Am I expecting too much out of friends and family because I thought they could help out once a month or once every other month?  There are so many ways that we could use help too.  It doesn't have to be anything huge... i.e. bringing us a meal, taking me to a doctor's appt, watching the kids so my husband can have a break every now and then, transporting my daughter to and from soccer practice, come over and keep my company for a few hours to help keep the loneliness away, etc.  Am I asking too much of my friends and family when I ask them to participate in a fundraiser once a year?

I have never thought that I was expecting too much out of people.  I guess that's because I would do all of those things and more if the roles were reversed.  Hell, I DID do that much for my grandfather and I'm dealing with being sick myself.  So, I guess I've always thought that if I could do those things for my grandpa despite needing help myself, then why can't my perfectly healthy friends and family do it for me?

Well, I think this is my main problem when it comes to relationships.  I'm sure the other things I listed play a part as well.  However, I've always wondered if this is the case.  BUT... before you say, "then lower your expectations", let me say, "I don't want to."  If the expectations I have of my friends and family are too high, then I guess I won't have friends and family (I know, they're still my family but that doesn't mean I have to have a relationship with them).  I don't want friends like that.  If it's too much to ask for my friends to do the things I mentioned above, then I'd rather not have friends.  In fact, I've stopped talking to a couple of people for that exact reason...

If I'm asking too much of my friends and family, why are there hundreds of thousands of people out there who have friends and family who treat them the way I want to be treated?  Why are there pictures like the ones below that describe EXACTLY how I'm feeling it should be?

I wish this were true.

And this one.

I do try.  I try and try and try to have a good relationship with my friends and family.  I'm not just sitting here expecting everyone else to do all the work.  I am constantly trying my best to be a good friend.  Unfortunately, my best isn't good enough.  My best does include periods of irritability.  My best does include not being able to get out and do much outside of my own home.  I am constantly trying to make other people happy.  Unfortunately that's not easy for people to see.  Why?  Because for me, going out of my way to do something for a friend may look like a normal thing for someone else to do.  For me, doing something like buying a birthday card for someone means going out of my way for that person.  Where as for a normal person, buying a birthday card and putting it in the mail is no big deal.  (I won't get into the details of how much energy it takes just to go to the store to buy a card and put it in the mailbox... but it takes a whole hell of a lot of spoons.)  So people may not think I'm doing much for them as a friend or family member when I feel like I'm climbing Mount Everest.  Something as simple as baking and decorating a birthday cake or cupcakes may not seem like that big of a deal to most people, but to me, it's huge.  Doing something like that, which I've done a couple of times for people I care about, makes me sick for days.  Why would I do that to myself?  Because I care and I want to help others and make them happy.  But it never seems like it's enough.  Despite all of the effort I put into my relationships, I don't feel like I get it in return.


After being depressed for many months now and many sleepless nights spent thinking, I've realized that nothing's going to change. And I can't make it all go away, like I've thought about many times, because I wouldn't be that selfish to my daughters.  My friends and family are who they are.  I can't make them give a shit.  If my friends make it apparent they don't give a shit, they are no longer my friends.  I have stopped talking to a few people over the last year because of that exact reason.  I'm not going to put my all into a relationship to get nothing in return.

I've decided that the only thing I can do is change myself.  I can no longer rely on the comfort of others around me to make me happy. When I do I'm only let down and hurt.... over and over again.  My entire life I've liked to be around people.  I like to interact with others.  It makes me happy.  That's going to have to change.  I'm also going to have to realize (which I should've done a long time ago) that the people in my life aren't going to help, visit, or call on a regular basis.  And some of the ones who do are going to hold it over our heads that they do help.

So, the one thing that I'm going to change in an attempt to make this horrible emotional pain stop is my thoughts about others.  I now know that, aside from my husband and children, I am pretty much alone in this journey.  It's not that I'm changing my expectations of my friends and family, because in my heart I know that that's what family who cares and true friends do for those they love; I'm just realizing that many of the people in my life are unable to be the friend that I need.  I have held on to the hope that everyone would change and be the loving, caring, helpful people that I need.  After 3 1/2 years I need to realize that if it hasn't happened yet, it's not going to happen.  There are a couple of people who have been there for me physically and emotionally.  Aside from them, I just need to quit holding out hope that the other people in my life will change.

Does this revelation change things?  Not really.  It's almost more depressing.  At least before I still had hope that people would be there for me and I would eventually have the kind of relationships that I dream about having.  Now I know that that's not going to happen.  It helps in a way because I won't keep getting let down by the people in my life.  But it also hurts.  When I get down because I am lonely or need help, I can no longer think, "maybe someday this person will visit me more often, or that person will help more often."  I, instead, just have to come to my senses and realize that that's not going to happen and my life is the way it is.

I can't say how much I will be posting in the near future.  It took a lot just to post this one.  I still have that feeling of "why am I even doing this?"  Of course, that has applied to a lot more than just writing in my blog lately.... such as life....

Why am I even doing this?

My Story

Over the last 3 years I have written about my journey through my illness on this blog.  However, I have never written the entire story about my my health problems, diagnosis, testing, etc. all in one place.  If someone wanted to know they'd have to take bits and pieces from multiple different blog posts and put them all together.  Since I have had many people ask me and/or I've had plenty of situations come up in which it would be nice to have, I thought it would be a good idea to write the cliff's notes of my journey (or at least the medical aspect of it) all in one place.

So, without further ado, here's my story...

The "Before" Picture
Kansas City Half Marathon - 2008

The Start of it All -

In July/Aug. of '09 I started to develop headaches. They quickly became daily headaches that continued to get worse.  That was the first thing that prompted me to see a doctor... or numerous doctors.  In Dec. '09, I actually stopped working to find the cause of my headaches.  At that time I thought it was temporary until I found the cause of my headaches and got them taken care of.  However, within a couple weeks I started developing symptoms of POTS (Postural Orthostatic Tachycardia Syndrome): tachycardia (extremely elevated heart rate), fainting, shortness of breath, dizziness, exercise/activity intolerance, etc.  I ran a half marathon in October and couldn't walk up a flight of stairs without getting short of breath by December.

Getting a Diagnosis -

I saw numerous doctors here in town who could not figure out what was going on.  I had test after test after test.  I even had a 24 hour stay in the hospital because my cardiologist wanted to get things done faster since I was getting worse, not better.  My cardiologist diagnosed me with POTS but he truly believed something else was going on.  He helped me get into the Mayo clinic in March of 2010.  The autonomic specialist at Mayo diagnosed me with POTS.  The main symptom I had at that time that couldn't be explained by POTS was my muscle pain.  She just blew that off.

They sent me home with a regimen of slowly increasing exercise that would "cure" my POTS.  However, exercise did nothing but make me feel worse.  I would be practically unable to move for 2 days after 5 minutes of exercise.  I called the doc at Mayo a couple of months after I was there and again 2 months after that.  I was trying to explain to her that the exercise only made me worse, not better and my muscle pain was getting worse.  When I was there in March '10, she, and the cardiologist I saw at Mayo, both said that if the treatment plan they gave me did not work to call them and they would get me back in to see them again.  However, when I called the autonomic specialist just said that the pain was probably just fibromyalgia and if I came back she would just send me to an internist who specializes in fibromyalgia.  I even brought up mitochondrial disease to her and she said that since my emg was normal there was no way I had mito. (An EMG means nothing when testing for Mitochondrial Disease.)  Well, needless to say, I have not spoken to or seen anyone at Mayo again.

I had brought up mitochondrial disease to the doctor from Mayo because I had done a little bit of research on the topic.  I knew in my heart, and because of my intuition, that POTS was not the explanation for all of my symptoms.  I started researching diseases that have dysautonomia as a symptom instead of the primary disease.   Everywhere I looked, mito seemed to be the answer. I ended up talking to someone from a message board for dysautonomia who was diagnosed with mito after he was diagnosed with POTS.  His symptoms and experience were very similar to mine.

And "After"

The man I talked to was very helpful and gave me a lot of information.  He saved me a lot of time in research.  He gave me the name of a doctor in Atlanta who specializes in mito.  He also discussed with me the difference between frozen and fresh muscle biopsies.  Armed with all of this information, I saw a neurologist at the local university medical center.  I got his name from the MDA website (http://www.mdausa.org/locate/).  That site is supposed to give you the name of a doctor who is familiar with all of the diseases on the mda spectrum.  However, I learned that the doctor I saw based on the information on the mda website was not very familiar with mito at all, even though it's one of the diseases covered by mda and mda clinics. The purpose of my visit was to get an order for a muscle biopsy.  He actually suggested it before I did so I was glad.  He suggested a doctor in Texas but I wanted to see Dr. Shoffner based on the recommendation I talked about above.

It took a few months to get in with Dr. Shoffner.  I had seen the mda doc in Aug. 2010 and I got in with Dr. Shoffner in Dec. '10.  At that time I had a fresh muscle biopsy, an exercise test, and a bunch of lab work.  I returned in March '11 for the results.  That is when he informed me that I had mitochondrial disease.  The testing showed a defect in Complex I and Complex III.   You can see all 40+ types of mito here... Types of Mitochondrial Disease  So you don't have to fit into one of the acronyms to have mito.  That's the interesting thing about it.  Everyone with mito is different.... different symptoms, different test results, different age of onset, etc. etc.  

After my appointment with Dr. Shoffner in March '11, he planned on doing genetic testing to find out what gene defect was causing my mito.  That search is still kind of ongoing and here's why...  I finally received the results of that test last December about a week before my appt. with my local geneticist.  That was lucky because he was able to discuss the results with me so I didn't have to return to Atlanta to Dr. Shoffner's office to discuss them.  The genetic defect is in my mitochondrial dna and it usually causes LHON (it's in the list of mito diseases).  However, I don't have any of the primary symptoms of LHON.  I have since been to another mito specialist and she thinks that the defect that was found is not the primary cause of my mito.  It is possible, per the geneticist here in town (not a mito specialist), that I just have different symptoms than most patients with LHON.

Progression and Moving Forward -

Mitochondrial Disease is a progressive condition.  I was told by Dr. Shoffner, the mito specialist, that I would continue to progress until I, eventually, hit a plateau.  I will then stay at that plateau inevitably.  If that is true, I have yet to find my plateau.  I have continued to progress since my diagnosis.  It has not been a rapid progression, thankfully.  Of course, that can be based, somewhat, on opinion.  I have met the mother of a woman who was diagnosed at age 19 and passed away less than a year ago at 24.  She had slow progression, like myself, until the last year or so of her life.  All I can do is hope that that won't happen to me.

In August 2011, I got my electric wheelchair and was finally able to go shopping or do other things that required standing or walking further than a few feet.  By that time I had already been using a chair in the shower as I was unable to stand long enough to shower.

In September 2011, I started developing a new problem/symptom: GI dysmotility. My gastrointestinal system was starting to slow down... quickly.  Ha!  It was slowing down quickly.  I'm so funny.  Okay, moving on from my not so funny joke...  I started seeing a GI specialist and getting tests done.  I had multiple tests to check the rate of my digestion in my stomach and my intestines, an endoscopy, colonoscopy, and a couple of tests to check the muscle strength of my GI system.  One of the tests I had done was called a Sitz marker test. It showed that it can take up to 19 days or more for me to digest something.  You can read more about my GI tests and problems here and here.

In January 2012, I saw Dr. Fran Kendall, a mito specialist, for a second opinion on my diagnosis and because I wanted a different mito specialist to follow up with other than Dr. Shoffner (I won't get into the reasons why.  If you want to know, email me.)  She agreed with the diagnosis. Shocker!  She also recommended that I start receiving IV fluids a couple of times a week to help keep me hydrated.  Patients with dysautonomia and/or mito need to stay very well hydrated.  Because of my GI problems, I wasn't.  So, when I returned to Kansas City, I had a port a cath placed in my right chest.  I have been receiving IV fluids ever since.

My GI problems have continued to get worse.  In August 2012, I overdid it while planning the Energy for Life walk and hosting another fundraiser.  I wound up in a mito crash (want to know what a mito crash is? - read about it here) that put me in the hospital for 3-4 days.  One good thing came out of that hospital visit.  I am now taking one liter of IV fluids a day due to my GI problems.  I am having constant problems with nausea, vomiting, and chronic constipation. About every other week I go 3-5 days without eating much solid foods.  Right now I am just trying to hold off on getting a g/j tube (feeding tube). GJ tube info

I have been seeing a pain specialist for a couple of years now.  He has kept me on pain medication and medication to stop my muscle spasms and twitching.  But, because I'm going to be in pain for the rest of my life, and because the pain medication has a negative effect on my GI system which is already struggling to work, I am in the process of getting an intrathecal pain pump. Information about the pain pump

So, I use an electric wheelchair to get around.  I have a port a cath and receive IV fluids daily.  I take multiple medications every day.  Soon I will be getting a pain pump and eventually, when my GI problems progress enough, I will need a G/J tube.  I'm going to have a little difficulty going through the metal detectors when I travel.  Hopefully they won't think I'm hiding a bomb inside my abdomen (pain pump) or chest (port a cath).  If you want to know each and every one of my symptoms, I listed them in this blog post - here.

This is my life now.... take it or leave it. (Don't tempt me.. because there are definitely days in which I'd leave it.)

Conclusion - 

So, that's my story.  The condensed version.  I was healthy my entire life until I started developing constant headaches in July/Aug. 2009 at age 30.  The main symptom that did not fit with pots alone is pain; all over muscle pain that got worse with activity.  My pain was also getting worse as time went by.  That was the main thing, along with the fact that exercise made me more sick instead of helping like they said it would, that made ME (not any of my doctors) look at mitochondrial disease.  The biggest thing that helped me?  I followed my instinct!  I left Mayo with a diagnosis of POTS.  My mom and step-mom went with me and were both happy with the diagnosis, treatment plan, and prognosis.  I, however, left there feeling like it was a waste of time.  I KNEW something else was wrong and that was before I started researching mito.

So, mito can start at any age.  I have talked to a lot of adults who have adult onset mito who now have an explanation for all the things that happened to them earlier in life.  I'm not one of those people.  I, on the other hand, grew up without a single health problem (aside from broken bones from my active/daredevil lifestyle) until a ton of health problems hit me like a ton of bricks at 30 years old.

If you have any questions, feel free to ask.  I may have trouble returning emails in a timely manner, but I always return them... eventually.  I'm happy to help in any way I can.

Happiness with a Chronic Illness

"The purpose of our lives is to be happy." - Dalai Lama

What is the meaning of life?  That's always the million dollar question. Right?  I have always believed that the meaning of life is to be happy.  After all, what is life if you aren't happy?  All I have ever wanted is to be happy overall.  That doesn't mean that I wouldn't have any stress in my life what-so-ever.  No one can avoid all stress.  That doesn't mean I would be happy 100% of the time, either.  That's not realistic.  However, it is realistic to be happy overall or in general

I was there once.  I really was.  I was genuinely, truly happy.  I loved my job.  I was an emergency room nurse and I loved it.  I enjoyed going to work and if I had too many days off in a row, I was anxious to go back.  My coworkers were like my second family, or so I thought. I had friends.  I didn't have a ton of friends, but that's not what I've ever wanted.  I had a handful of friends who I loved and I believed, at the time, that they loved me back.   I had (and still have) a wonderful husband whom I loved more than I've ever loved anyone, aside from my kids.  And, speaking of my children... I had two beautiful daughters (and still do).  My husband had a decent paying job.  No, we weren't rich, but I don't need a lot of money to be happy.  We made enough to pay our bills and still have money left over to buy the things we needed and a few things we wanted every now and then.  In other words, we weren't worried about money for the first time in awhile (or ever).  I only worked my normal 3 shifts a week and didn't work a bunch of overtime.  Because of that, I was able to enjoy my days off with my daughters and have a little time to myself every now and then.  Lastly, I was in better shape than I had been my entire life and I was loving it.  Not only did I look good, but I felt good.  I was so happy to have found a "hobby" that I thoroughly enjoyed and was proud of myself for doing it... running, training for races, and lifting weights at the gym.  I also had the thrill of climbing two mountain peaks in Colorado.  I knew right away (despite my sore body) that I found a new hobby.  I was happy... very happy.

Here's the ironic thing... just a few short months later, it all went down the drain... and fast.  For the first time in my life I was truly, utterly happy... and then everything changed.  I got sick and lost everything.  Everything that made me happy, aside from my children and my husband, went away.  Talk about a high and a low.  Why did this have to happen to me?  Why, when I finally felt truly happy for the first time in my life, did it have to all go away so suddenly?

Now I was I dealing with the exact opposite of true happiness. Many people in this world know about the grieving process.  Many have gone through it when they've lost a loved one.  Now I have gone through the grieving process as well.  However, mine is over the loss of my own life, not someone else's.  All of the things that I listed above that were making me happy were gone with the exception of my kids and husband.  My job/career, my friends (at least the majority of them), my work "family", running, my body (in two respects -the fact that my body was in the best shape ever and that it worked, period), and money.

I had lost all of those things 3 years and 5 months ago.  I have been through all of the stages of the grieving process, including acceptance.  I am in the acceptance stage now.  I do accept that this is my life now.  I know that I cannot go back to the way things were.  I do not pine after my old life anymore.  Well, not completely.  I definitely miss all of those things, but I know that my life will never be the way it used to be.  I may accept that this is my life now, but that doesn't mean I'm happy with it.

So, the question is this... How can someone who is chronically, progressively ill be happy?  How can someone be happy when they're sick all the time?  For those of you without a chronic illness, go back to my comparison to having the flu (Explaining Myself Again), which is the closest you can come to imagining what  life is like with chronic illness, even though it's still pretty far from what my life is like.  Imagine how your life would be and how you would feel if you had the flu every other week.  And on the weeks that you don't have the flu you get tired easily, you still feel weak, slightly nauseous, and in pain.  In other words, you never feel completely fine.  How would your life be?  Would you be happy?

I know I'm not.

Many people go through rough patches in their lives.  The difference is that for most people, they are able to see a light at the end of the tunnel.  Most of the time, people can say "this too shall pass."  For me, and most people, it is much easier to get through something difficult in life (the loss of a job, divorce, the death of a loved one, etc.) when you know it's only temporary.  No, the death of a loved one is not temporary and neither is divorce.  However, in both of those situations people are able to go on with their lives after awhile.   And please don't get me wrong.  I am not saying that any of those situations are easy... far from it, in fact.  I am just saying that, in most situations, people are able to get through it and after a period of grieving and adjustment, they can continue on with their life.
 
According to the CDC, about 1 in 10 people over the age of 12 in the United States take antidepressants.  And, up to a third of people with chronic illness suffer from depression.  Here is an article about chronic illness and depression - Chronic Illness and Depression.  The article states that "depression is especially likely to occur when the illness is associated with pain, disability, or social isolation."  Sound familiar?  Mitochondrial Disease, at least in my case, causes all 3 of those things.  I am in constant pain.  I have to use a wheelchair to get around at least 60% of the time after living a very active life.  And, as I've discussed many times, I am definitely in social isolation.

"Happiness is not something ready made.  It comes from your own actions." - Dalai Lama

I have tried to be happy.  I have found things I like to do that doesn't require much physical activity, despite spending the first 30 years of my life enjoying only things that do require physical activity.  I have become involved in fundraiser after fundraiser.  Actually, I haven't become involved.  I've created them myself.  I have spent energy I don't have helping others (friends, family, and the needy), as much as people will let me, since I'm no longer able to do so as a nurse. I even tried volunteering at my daughter's school.  I couldn't keep it up because I had to cancel too many times because I was too sick to come in.  They need someone who's going to be reliable and actually show up when they say they're going to.  I've added friends, gotten rid of "friends", and changed current relationships to try to make them better.  I've seen 2 different therapists since I've been sick.  I've even read books on dealing with life with a chronic illness.  So, it's not like I haven't tried.

"The two enemies of human happiness are pain and boredom." - Arthur Schopenhauer

There are only so many things a person with a serious chronic illness can do to make themselves happy.  What can you do from your bedroom or couch?  And then there are only so many distractions from the things that make you unhappy.

Nothing I've done changes anything.  I'm still unhappy.  I don't know how to be happy while feeling bad/sick all the time.  I do okay on my "good" days, but I'm not talking about how I'm doing from day to day.  I'm talking about overall happiness.

"The greatest happiness of life is the conviction that we are loved; loved for ourselves, or rather, loved in spite of ourselves." - Victor Hugo

Unfortunately, a big part of my happiness relies on my relationships with others.  Why is that?  Well, I've always been a social person who enjoys being around others.  I like to talk. (Even those of you who don't know me personally should know that by now based on how much I ramble on in my blog posts.)  I spend day in and day out at home by myself with my only connection to the outside world being my computer.  (Remember that social isolation I mentioned above?)  That takes a toll on someone who likes to be around people.  I try to make plans with others but people don't always want to come here.  The ones who do only come on occasion.  Because of that I try to get out and meet people places but I just wind up cancelling on them 75% of the time because I'm too sick and/or weak to drive myself there, sit up and visit for an hour or more, and drive myself home.  And, as I've discussed in multiple posts, the amount of help and support continues to dwindle.  If it wasn't for my mom it would be pretty close to none at this point.  The stupid thing is that I don't even want help with anything anymore. Would I appreciate it?  Of course.  But at this point in time I'd be happy with people coming over to visit with me for an hour or two, but that's a rarity.  My own grandma doesn't even want to come over and spend time with me most of the time.

I don't know what I do to chase everyone away.  Maybe it's a vicious cycle.  Maybe people don't come over because I'm not happy.  However, the fact that I hardly ever see anyone makes me unhappy.  I thought I was a good enough actor to make people believe that I'm okay.  At least enough to where people still enjoy hanging out with me.  Maybe not.

Writing has been very therapeutic for me. Hence, the blog.  Getting it all out there for others to see almost makes me feel as though I'm taking my problems off of my shoulders and letting them float away into the world.  There's still a little bit inside of me that I have to deal with, but the majority of it is out there for everyone else to learn from and maybe even help me learn.  However, I almost didn't even write this post.  I have thought about it many times during the last month or more and every time I just didn't feel like it would help.  In fact, I have even thought about how many times I have written about the same things... over and over again.  Why do I keep writing about them? Because nothing's changed.  Nothing gets better.  It's just the same thing, day in and day out.  I'm sick and I wish I had more people around.  That is my life.


"The mystery of human existence lies not in just staying alive, but in finding something to live for." - Fyodor Dostoyevsky

For me, that is my children and my husband.  The unfortunate thing is that they are the only thing.  The good thing, though, is that I'm not selfish enough to ever leave my children, no matter how unhappy I am.

So, I continue on.  I exist.  I go through the motions of a life that I did not wish for... a life that makes me unhappy.  I pretend to be happy.  I pretend to be okay.... physically and mentally... while I'm not. That is my life... now and forever.