Saturday, December 22, 2012

Chronic Disease = Chronic Loneliness

First, a little update for those that want to keep up....
Last week I had a mito crash.  It was a typical mito crash, as mito crashes go.  Well, maybe a bit worse than typical, I suppose.  I had one day of nausea and vomiting followed by multiple days of extreme fatigue, weakness, and headache.  In fact, the day following my n/v I was probably weaker than I've ever been.  I slowly got better as I always do.  Well... kind of.

Last Sunday I thought I was on my last day of my crash.  I was at about 75% of my "normal" self after a crash that started on Tuesday.  We went to my in-laws for our Christmas gathering.  I felt okay the entire time I was there, minus some weakness (that's the 25% I'm referring to).  When we were heading home I started to feel horrible (nausea, headache, weakness).  The next day I didn't eat much and felt a little nauseous.  The day after that is when I really couldn't eat anymore without vomiting.  It's now Friday and I've barely eaten in the last 5 days.  I can only keep soft foods and liquids (shakes, pudding, ice cream, etc.) down and that's only if I eat a little bit at a time.

So, needless to say, it's been a tough couple of weeks.  Funny thing is that I was going to post at the beginning of last week about how good I had been feeling.  My last post, in fact, was right in the middle of when I was feeling good.  However, I wanted to discuss the doctor's appointment so I thought I'd wait until the next post to tell everyone how awesome of a week I had.

It was amazing.  I left my house to do something every day a couple of weeks ago.  I had a doctor's appt one day, visited my grandparents the next, had a meeting with social services to get help for Christmas presents and a meeting with my daughter's school counselor the day after that.  That was all just on Monday, Tuesday, and Wednesday.  I don't recall what I did the last 2 days of the week but I went out.  I couldn't believe how well I was tolerating it all.  Of course, while I was hopeful that I would continue to feel that way, I was also waiting for the shit to hit the fan, per se.

Well, the shit hit the fan.  And it's continuing to do so.

I am very thankful that the last time I was in the hospital my doctor changed my IV fluids to daily instead of 3 days a week.  I have also had days over time in which I didn't use my fluids.  Therefore, I have some extras.  Right now, since I'm barely able to eat or drink anything, I've been trying to take in a liter and a half a day.  That, along with the very little bit I've been able to take in food wise, has kept me above water so far.  However... I don't know how long I'll be able to continue at this rate.  No matter what, I will be okay until after Christmas.  I will make sure of that.

On another note...

Being sick is lonely.Very lonely.

As you may already know from my blog, I don't have a lot of friends to begin with and most of my family is barely there (except for my loving parents).  When a person is sick, including myself, they will lay in bed and watch tv or read, and feel bad.  That's about all a person can do when they're sick.  That's all I can do right now.

The only connection I have to the outside world when I'm sick is the phone and the internet.  Mostly the internet since many times I am not up to talking on the phone.  I am on Facebook all the time.  I update my status on a regular basis.  I'll be honest.  I update it for two reasons.  One, to let my family and friends know what's going on.  Two, to know that I have family, friends, and other mito supporters that are there for me and care.  However, the 2nd purpose isn't working so well.

I have almost 350 facebook friends.  Many of those are from mito support groups.  I am always seeing people updating their status with how they're doing or what's new with them or their child with mito.  I, along with multiple other people, am always commenting saying that they're in our prayers (obviously that's from the other people) and thoughts, etc.  Mainly just letting everyone know that we're there for each other.

I also have a couple of friends who I talk to outside of facebook (in addition to facebook) who also deal with mito on a regular basis, whether it's themselves or their child.  I feel as though I am a good friend to a few of those people, in addition to my other friends who aren't dealing with mito.  I have gone out of my way many times to be there for friends when I feel like they need me.  Whether it's via text, phone, email, or facebook, I am constantly checking in on those friends who're dealing with mito and their kids.  I genuinely care about these people, even the ones I've never met in person and just talk to on facebook.
It may be for Epilipsy awareness,
but it applies to all diseases/illnesses.

So... why do I feel like it's never returned?  When I'm sick I'm not getting texts, emails, phone calls, etc. from friends or other people from the mito group checking up on me.  I don't have 10-15 people responding to my facebook status updates letting me know they're praying for me, thinking about me, or just letting me know they're there if I need someone to talk to.  No, "I'm so sorry you're feeling so bad right now," comments.  No, "I hope you're able to stay out of the hospital" comments.

I thought that being a good friend/person meant that people would be a good friend in return.  Don't get me wrong.  I'm not doing it because I want something in return.  I just like being a good friend.  I like making people feel good/better.  I just wish I could have a friend that did the same.

Laying in bed feeling horrible sucks.  Laying in bed, feeling horrible, and feeling like no one (except my husband and parents) gives a crap day after day is just plain miserable.   

Here is a great article on Chronic disease and loneliness - Chronic Disease: Plugging In
Another article by the same author.  He takes the words right out of my mouth... The loneliness of chronic illness

I agree with almost everything in the article and am right there with him.  On my "good" days I try my hardest to keep myself busy and "plug in" to the world around me, especially the mito world.  That is why I have done so many things to stay involved in the mito community; because I can feel better about myself for doing what I can for others who are suffering like I am.  In addition to the Energy for Life walk, I have attempted to organize a gathering for people dealing with mito in the KC area.  I also plan to help with support group planning in 2013 and have already discussed it with umdf.  I also comment on statements made in the facebook mito groups to try to help others as well.  However, as the article states, it's difficult, especially when I'm too sick to do anything or go anywhere, to remain "emotionally upright" and to "resist the never ending urge to crawl into a hole."  (Cohen, 2011)

No matter how much I try to make myself feel better emotionally, I can't do it as long as I am going through this so alone; without much support from friends, family, and even strangers.

Another couple of sentences from the article really stood out to me as well...  "Connections matter... Maybe the human touch, even on the phone, reassures us we are not standing alone on the battlefield, fighting for our lives. ... No matter how supportive family and friends are, it is wrenching for us to feel so along." (Cohen, 2011)

Friday, December 7, 2012

Another Day, Another Doctor

I had an appointment earlier this week with a Gastrointestinal Motility Specialist.  She is a normal GI doc who specializes in motility issues (the movement of materials through the GI tract).

I have been looking forward to this appt. for months, especially since it took over 4 months to get in.  She was very thorough.  It was a good test of my memory, that's for sure.  The funny thing is that I have kept a 3 ring binder full of all of my medical records for awhile now.  I almost always take it with me to appointments with new doctors.  That way, if they ask a bunch of questions, and I don't remember the answer, I can just look in the notebook.  However, the last couple of times I took the binder with me to an appointment, I never even opened it.  Soooo I quit taking it.  You know how many times I wished I had that binder with me at this appointment???  (Of course, it's not updated so it still wouldn't have done me any good, but you get the drift.)

After asking a bazillion questions, she had me get up on the table and she examined me.  Then we talked.  She wants me to change the prescription laxative I'm on to over the counter bisacodyl (name brand - Dulcolax).  She also wants me to take a bowel prep once a week to "clean myself out".  If you're not familiar, bowel prep is what's used prior to having a colonoscopy.  Not fun!  However, I'm not real sure it's going to be that bad because the bowel prep barely worked for me when I had to use it for my colonoscopy.  I did the bowel prep and then I still had to have 5 enemas.  Even then, the GI doc at the time said that I still wasn't fully "cleaned out." (As always, I'm sharing a whole hell of a lot about myself... all in the name of blogging.)  

I was worried about two things going into this appointment.  The first being that she would not believe I have mitochondrial disease.  Yes, doctors still doubt the diagnosis despite having a muscle biopsy and genetic testing to prove it.  And two, that she would blame all of my GI motility issues on the narcotic pain medications I've been on since after my POTS diagnosis.

However, I ended up being worried for no reason.  She did not doubt my mito diagnosis at all.  She asked a lot of questions about the pain meds but never brought up any concern that they were the cause of my GI problems.  FYI... I was on a medication (Relistor) a few months ago which counteracts the effects of narcotic pain medication on the GI tract.  The GI doc I've had for a little less than a year who put me on the Relistor also thought, at first, that the narcotics were causing all of my GI problems.  However, since the Relistor didn't work, it proves that my problems are not from the pain meds.

When I left the appointment I actually felt a little down.  At first I couldn't figure out why I felt that way, but after a bit of thought, I figured it out.  If you have ever read my blog before you probably think that I have resigned myself to a lifetime of being sick.  Sometimes, okay, most of the time, I probably display to the world that I don't hold out much hope of getting better.  A lot of people call that being negative.  I call that being a realist.  Well, contrary to popular belief, I still hope and dream that I will be better again.  I am also in denial every now and then.  Usually I keep both of those things hidden from the world and buried deep inside.  That way, I can't get hurt when those hopes and dreams don't come true.

Well, it obviously doesn't work.  Come to find out, I was looking forward to my appointment with the GI motility specialist because I was holding out hope that she would have a better solution to my GI dysmotility. Instead, she said something that my previous GI doctor hasn't said.  She said that I will be on laxatives to keep my system moving for the rest of my life and that there's not a whole lot more she can do. The only change she made was what I discussed above and the only reason she did that is because the medicine I'm currently on causes a lot of bloating.  However, she didn't have any solutions to the lack of motility of my entire GI tract.

Those statements ended up being harder on me than I imagined they would.  I guess I just held out too much hope that she, being a motility specialist, would have a better solution to my problems and would, therefore, be able to keep me from needing a G/J tube (feeding tube) in the future.  However, if the motility specialist at a huge academic hospital doesn't have any better solutions, I'm probably out of luck.  So that explains why I was little down/sad after my appointment.

On another note, while I'm talking about my current health status...  I have ANOTHER UTI.  That makes 4 in 13-14 months.  That means that I need to see a Urologist.  There's a good chance I have something called neurogenic bladder.  One more thing to add to my list of health problems that are caused by my mito.  You know, since I don't have anything else to worry about.  I'll update on the bladder situation when I know something.

Thursday, November 29, 2012


I want to share a poem with you all.  I'm sure everyone dealing with Mito, POTS, or any other chronic, debilitating illness can understand exactly how this feels.  Thank you, Sarah, for writing such a beautiful, meaningful poem.

By Sarah Aumick

Hear my screams
My cries of anguish
As my heart shatters in my chest
Deep in my breast
A hole resides
Tearing my apart inside
As I try
Try so hard
To live up to everyone’s expectation
To laugh and smile
As my heart breaks
All I ask is, “Do you see past my smile?”
Hear the cry in my laugh
And the scream in my prayer
Give me a hand up
Pat me on the back
Because I’m struggling
And all I need is an acknowledgement that I’m in pain
So hear my scream.

A Note to the family, friends, and caretakers of people with chronic, debilitating diseases

It's so difficult to be in the position I'm in; to live the life I lead.  People do not understand.  The only people who can even come close to understanding are those who are going through the same thing I am.  Sometimes it makes me just want to escape, to become a hermit or recluse.  It can be VERY frustrating dealing with people.

I'm sure I'm not alone in these feelings.  This is something everyone with with chronic illness deals with.  Because of that, I want the caretakers of those people to understand a few things...

Some people get upset about stupid petty shit.  I worry that I will not be around to see my two beautiful girls walk down the isle at their wedding while others are getting worked up about little things that if they really thought about it, would have no reason to be upset in the first place.

None of us know how short our lives really are.  Some of us have to worry about it more than others.  Some of us should realize that others have to worry about it more than others.

There are people out there who wait until someone is on their death bed and/or dead before they make themselves a part of their life.  It's a little too late by then.  For some people I think they just don't realize it until it's too late.  But for many/most they are only there at that point in time for appearances.  They probably don't even realize they're doing it, but they're just putting on a show for others, to make sure they appear thoughtful and caring.
Be there for the person when they're alive!  Be there for your family and friends when they need you... when they're alive!  They don't need you at their funeral.  They're dead!!!  It's too late by then.  Don't try to be a martyr when your friends and family are dying.  They need you LONG before that.

To the family and friends of those with mito or other illnesses - We're not faking it.  We aren't doing it for attention.  We are sick.  We hate being sick.  It's miserable.  If we say we're not feeling well, we're not feeling well.  We don't want to deal with other crap.    We need help... especially if we have kids that we have to take care of when we aren't even able to take care of ourselves.  There are many days in which mito patients are unable to take care of themselves.  Be there for them.  Offer to bring them a meal, take care of their kids, or just sit with them while they continuously vomit or writhe in pain... and not because they'll do something for you in return, or because they'll owe you one.

We don't want to take care of other people while we're sick.  However, most of us still really care and want to help others when we're able.  We feel guilty that we can't, but that doesn't magically make us well enough to do so.  Give us a chance, but don't get mad when we can't help.  There are things that we can help with and things that we can't.  In my case, if I can help, I'd love to.  If I can't, please don't get mad.  I have to be careful that doing something to help others would not make me more sick (i.e. something that is too physical, would increase my pain, or disrupt my sleep).  If that is being selfish, then so be it.  I think I can speak for all of us with mito or another similar illness in that we would love to be able to pay people back for what they do to help us, but sometimes we just can't, and it hurts when we're expected to.  Can't people just help us because we're their family or friend and not because they'll get something in return?

On the other hand, please keep in mind, we may be sick but we're not completely useless and incompetent.  We may have brain fog but we're not stupid.  In my case, I haven't forgotten everything I learned in nursing school.  I was a good ER nurse.  I was well educated.  I may have trouble getting the right words to come out of my mouth but they're still in my brain.  I love to be able to help others with medical questions because of my training, if you just give me a chance.

People who've had their lives completely turned upside down and inside out by mito (or another debilitating disease) struggle with their self worth.  Who wouldn't in our position?  We can't work and help support ourselves and our families.  We can't take care of our kids.  Hell, we can barely take care of ourselves.  Don't make it worse by treating us like we're completely worthless or an idiot.  Give us a chance!

And just because I can...

More than anything, what we need is support.  Support can come in many different forms.  If you can't, or don't want to help with laundry, chores, taking care of the kids, errands, or holding our hair back when we vomit, then be there as a distraction, as a shoulder to cry on, as a friend to laugh with.  Sometimes all we need is some company.  Someone to talk to us when we're sick, or down. You know, whoever said "Laughter is the best medicine," was not wrong.  So come over and make us laugh/smile.  Just be there.  Sometimes that's all it takes... to just be there.

So, family, friends, and/or caretakers of people who're living with a debilitating disease, are you confused yet?  Let me spell it out for you...

Be there for your family member and/or friend who has a debilitating disease BEFORE it's too late.

Don't get mad at them for stupid little shit when they're worrying about how to stay healthy this week, how to pay for their necessary medications (mortgage, electric bill, etc.), or whether or not they'll live to see another Christmas.

Help us when we need help... but without expecting something in return.

Let us help others when we're able, but don't get upset when we aren't.

Don't treat us like we're useless and incompetent.  Make us feel as though we still have a reason to be here, like we're still a valuable member of society.

Last, but not least, support us!  Be there for us!  Give us a shoulder to cry on and, even more importantly, a person to laugh with.  It is, after all, the best medicine.

I also want to share an article from  It is titled "36 easy things that you can do to make the life of your chronically ill friend a bit better."  The most important thing to take note of is when the author, Christine Miserandino, discusses her friend who had the flu and received flowers.  She states, "...Since I am sick all of the time - I get nothing.  Am I any less sick, sad, frustrated, lonely or bored?  NO... I need your love and support now more than ever."  I couldn't have said it better myself.

Since I know you have now put a lot of thought into what I wrote above about being a family member, friend, or caretaker of someone ill, I'm sure you will also take the time to read and think about all 36 of the things Christine suggests that caretakers do as well.
36 easy things that you can do to make the life of your chronically ill friend a bit better

Please be sure to read the next blog post as well.  I am posting a poem in a post all it's own because it deserves the recognition that it might not get if it was in the context of another one of my posts.

Monday, November 19, 2012

The Mito Hole

Well, it's been 9 days since my last post and things haven't gotten any better.  Of course, you probably don't know what I said in my last post since a whole whopping 7 people read it.  I'm setting records here!  Then again, I'm also not writing anything very insightful at the moment either.  Recently it's been more bitching than insightfulness.   And unfortunately, that's not going to change with this post.

Earlier today, when I was out running an errand despite having zero energy and having increased weakness and pain, I was giving some thought to why I've been sick so much recently.  It occurred to me that the reason why I've been sick more often was because of what I was doing at the time... running an errand... better known as activity.  I will explain...

Because of our increasing problems with money and inability to pay our bills, my dear husband has had to work a lot extra recently.  Just last week he worked almost 60 hours, 12 of them being on a Sunday night from 5:30pm to 6am and then taking a hour long "nap" before going in to his regular job at 8am.  As you can imagine, he was exhausted that night and for a couple of days afterward.  Unfortunately, that also fell at a time that I was having another mito crash.  So I wasn't able to help with much of anything.  In fact, I just added more work for him to do since he had to take care of me.

Of course, with how much he's been having to work recently, I haven't had much of a choice but to help with things.  Life goes on whether I'm sick or not.  The problem is that the more I do, the sicker I get.  The more my husband works, the more I have to do, whether I'm already sick or not.  But since I still can't do very much, things don't get done around here as much as they need to be - i.e. laundry, cleaning, grocery shopping, etc.

I just wish we had someone to come help us once a week.  If we had help once week for 3 or 4 hours, we would be in much better shape.  Laundry would get caught up, some cleaning could be done, and a couple of errands could be run, and maybe even transport my 13y/o to soccer practice.  I had someone who did just that for a couple of months when we had the money (after I got my disability back pay).  When we started struggling with money again we had to let her go.  Then, when I was getting sicker and had palliative care, they sent a volunteer who came once a week for 2-2 1/2 hours and helped with everything I listed.  She continued coming for a few weeks after palliative care was discontinued but she stopped helping as much and sat and visited instead.  We did okay for awhile during the summer because I had more good days than bad and my oldest daughter wasn't in school so she was able to help with everything.

Of course, if you're a regular reader of my blog you've already read my post Chronic Financial Illness Part II.  As I said in that post, being ill would be SOOO much easier with money.  I don't mean winning the lottery kind of money.  I just mean having enough money to pay our bills with a little extra each month kind of  money.  If so, we could pay our bills so my husband wouldn't have to work extra.  We could pay someone to come help us each week and/or we could pay someone to come clean our house once or twice a month.  That doesn't count how much easier my life would be and how I could probably be healthier if we had the money for the equipment and medications/supplements I need and have been prescribed.

So... I hardly see my husband.  We still don't have enough money to pay our bills, besides having any money for anything extra that might make life fun and/or interesting.  I am more sick than usual with more bad days than good recently.  Things are piling up around here.  And, as I discussed in my last post, I don't have friends knocking down my door and the phone's certainly not ringing off the hook (or at all).  Not to mention the fact that Christmas is already weighing heavily on my mind. (the weight being the burden of having to get help from a charity just to give our kids xmas presents... which is a huge weight for an independent person like me who hates getting handouts and who has never been "poor" in my life.)
...and that's just the big stuff.

Sometimes I just don't want to do it anymore...

Saturday, November 10, 2012

Tough month

Every now and then I get in a bit of a funk.  You can probably tell by my last post that this is one of those times.  It usually happens when one, I've been sick a lot recently, two, I haven't spent much time with friends, and three, I don't have anything coming up to look forward to.  Of course, number two happens because of number one.  (this would be one of those times in which my childlike husband starts giggling and making jokes about peeing - number one - and pooping - number two)  When I have mito crashes more frequently, or I'm just generally more ill (my muscles are a lot more weak, I'm fatigued and tired all the time which means sleeping a lot, I'm mildly nauseous all day, and I just have a general ill feeling), I don't get out of the house much or visit with friends.  Over the last few weeks, I have had those exact problems.  I had a severe mito crash 2 1/2 weeks ago and a couple of mild ones since then.  Many of the days in between I have just felt generally ill.

My pain has been a LOT worse over the last month as well.  Every time I'm up and around my neck, head, and shoulders start hurting worse than ever before.  And it starts up within a few minutes of activity.  My pain is normally controlled well, so it's usually kept down to a 2-3/10 on the pain scale.  However, recently, my pain has been closer to a 6-7/10.  My medications are just not cutting it.  There have been many days in which I am in tears by 5 or 6 o'clock because I just can't stand the pain anymore.  Every minute or two I'm trying to stretch the muscles in my head, neck, shoulders, and arms.  It never helps but I feel like I have to do it.

The pain in my head, neck and shoulders is called coat hanger pain.  It's called that because the pain is in the shape of a coat hanger.  It is very typical in dysautonomia.  Muscle pain is very typical in mitochondrial disease due to muscle weakness.  Doing everyday activities is like lifting weights at the gym.  So, I don't know why I'm having increased coat hanger pain.  There're a couple of likely possibilities, though.  My dysautonomia could be worsening and preventing adequate blood flow to my head and neck.  Or, my mitochondrial disease could be worsening causing increased muscle weakness, including in my neck, which would then cause pain when I use those muscles. That makes sense right now since my legs have been weaker recently too.  It could be a mix of both scenarios.  My neck pain is better when I'm laying flat and when I'm able to rest my head against something.  I have, therefore, been using the headrest on my wheelchair all the time now.  I never thought I would get to that point... at least not any time soon.

In addition to the increased physical problems causing my poor mood, I've been a little down because of the lack of supporting friends at the moment.  I have been trying to make new friends with a couple of people I met through the walk who're in the mito community.  It has been nice to talk to people who know what you're going through and dealing with.  Plus, I feel like I can give something back because I can relate with them as well.

Unfortunately, it takes awhile to build friendships.  In the meantime, I'm lonely as hell.  I can't get out of the house as much when I'm sick, which I've been recently, as I discussed already.  People aren't lining up to come see me or call me either.

Sometimes you just really need a friend to come give you a hug and tell you everything's going to be okay.  Sometimes you try to let your friends know that and, despite all the dropped hints and even blunt statements, you still don't hear from anyone.

Sometimes it's just not worth the effort anymore.... any of it.

Thursday, November 8, 2012

Hopes and Dreams

Hopes. Dreams.  We all have them.  Right?

Goals. Bucket lists.  Plans.  Intentions.  Purpose in life.  Ambitions.  Aspirations.  No matter what you call it, everyone has them.  Or do they?

I don't.  I used to have a lot.  In fact, I used to have my entire life almost planned out.  I knew what I wanted to do with my life.  I had plans.  I had dreams.  I had aspirations.  I had a list of things I wanted to do in my lifetime.  Well....   not anymore.

Tonight I was sitting in bed talking to my husband.  I looked down at my feet and thought, "Man, do I need a pedicure."  Now, with the way my brain works sometimes, that one little thought turned into deep thoughts about hopes and dreams.

You see, after thinking that I need a pedicure I realized that I won't be getting one.... ever.  At least not if I'm paying for it.

Maybe I should come up with an abbreviation for the parts of my life - PM for pre-mito and AD for after diagnosis. I think I'll stick with pre-mito instead of before mito so the abbreviation isn't BM.  I talk about BMs enough in my blog.

So, PM (pre-mito) I would look at my feet, think I need a pedicure, and then think "when things settle down in our lives" or "when our money situation gets better I'll get one."

That goes with anything I would have hopes or dreams about.  If I was thinking about traveling to Europe, I would just say to myself "when I get older and the kids are out of the house" or "in a few years when my husband and I are making more money, since we will both slowly advance in our careers."

PM, if we were going through a difficult time financially, I could look toward the future when everything would be back to normal (my husband would be employed, we've paid off our debt, the extra medical bills are gone, etc.).  AD, there is no end to our financial difficulties.  We can't pay off our debt because we still don't have enough income to stay above water each month.  The medical bills are only going to continue to grow as I continue to have more health problems.

PM, I could look forward to riding our motorcycles again after we sold them because we had a baby on the way that was going to keep us happily busy for a couple of years.  PM, I could look forward to my next trip to Colorado to hike and enjoy time with a good friend.  AD, I can't drive a motorcycle due to my muscle weakness (and we, of course, can't afford one anyway) and I won't be climbing any more mountains in my lifetime.

PM, I could look forward to my yearly raise and a possible promotion in the future because I took pride in my work.  AD, there is not yearly raise for social security disability and there's not much I take pride in anymore either.

Maybe everyone is like this, but I always had big dreams.  I planned on returning to school to get my masters degree in order to be a nurse practitioner (and double my salary - but that's not the only reason why I wanted to do it).  I planned on traveling a lot.  I planned on adopting an older child who's been in the system for too long and needs a loving family.  I planned on running a marathon and climbing many more mountains.

I had little dreams too... To make enough money to be comfortable.  I never wanted to be rich.  I just wanted to be comfortable, to be able to drive decent cars and live in a decent house (we reached that goal) and buy our kids the things they need and the occasional things they want without having to figure out where the money was coming from.

Any time I would have a thought like I did about the pedicure, I would just think that it's not always going to be this way and look forward to the future.  Things weren't always going to be that way.  It was always just a rough patch we were going through.  Or maybe it wasn't a rough patch, it was just a time in which I had to put off some of the things I wanted to do for happy reasons as well - i.e. being pregnant.  There was always the future.

However, it's different now.  Where I used to dream about the future and enjoy thinking about a time when things would be better or different, now I do all I can to avoid thinking about the future.  There's nothing there.  I don't know how things are going to be next week besides next year or 5 to 10 years from now.  All of the things I hoped and dreamed for are impossible now.  Whether it's because of money or my health, I'm not going to be able to do the things I have always dreamed or hoped to do.

Many optimists out there are probably saying, "make new dreams" and "you can still find a way to fulfill your old dreams".  Well, if you were in my position, you would understand why that isn't true.  Make new dreams?  I may be sick but my mind is still the same.  I still desire the same things.  And the second reason why that's not possible is the same reason why it's not possible to find a way to fulfill my old dreams... I don't know what my body's going to do from day to day.  I can barely make plans for this weekend besides 5 years from now.  This is a progressive disease.  Unfortunately, I have seen the progression in the 2 1/2 years since I've been sick.

As I lay in bed thinking about all of the things I would like to do with my life, it occurs to me that I'm too sick to do most of them.  Let's just say, for one minute, that I'm not too sick to fulfill some of my dreams.  Everything costs money, and lots of it.  That is something that we don't have.

So, for now, here I sit.  In the present.  Not looking toward the future.  I have nothing to look forward to.  So I push on, day by day.  Living each day as they come, just hoping that my disease will not get worse.

Thursday, October 25, 2012

Chronic Financial Illness; Part II

So my plan was to cover a separate aspect of financial issues while ill, but I really need to discuss some things pertaining to what I covered in "Part I" first.  Then I'll discuss the new stuff.

I'm being brave because the whole world is about to know my intimate financial problems/details.  (Well, the whole world is able to, but it's really just the 5 people in the world who choose to read my blog.) None-the-less...

Our financial situation, as you can imagine, has been horrible since I had to quit working in December 2009. I had enough paid time off to get us through until February 2010.  Since then we've struggled.  Since my husband was unemployed at the time I got sick (whoa... double whammy!), we had zero income for awhile.  That is when my parents kept us from living in a van down by the river.  (Are you picturing Chris Farley and laughing or smiling?  I am.)  Unfortunately, we will never be able to pay them back for everything they've done for us.

As time went on, my hubby (yes, I just said hubby) found a job.  After working at that job for awhile, he got a promotion.  We were both ecstatic.  He was working hourly and having to work over 50 hours a week in order to keep up with our bills.  With his promotion he would be getting salary and it was equal to his 50 hours a week (with the overtime).  Great!  That meant that he would be available for his family more often because he wouldn't have to work overtime, and because he would be able to take me to a doctor's appt if necessary and not get penalized on his paycheck for it.

We thought, based on the budget I had put together, that we would almost break even each month with the amount of salary he is getting.  However, I didn't include some things in the budget, I underestimated the cost of my prescriptions and medical bills by a LOT, and I didn't include extras - clothes/shoes, bday presents, school supplies, car repair, occasionally eating out (which is necessary sometimes.. like when both parents are sick, I'm in the hospital, or I'm really sick and it's soccer practice night, etc.)  Therefore, all of that added up to over $700 a month.  That is the amount we over in debts vs income.  A couple of months of that can be taken care of by using credit cards for gas and groceries.  Then it's taken care of for a couple of months by not paying medical bills and/or a credit card bill.  And then we have where we are now.... screwed!

We receive at least 10-15 phone calls a day from companies we owe money to.  We are behind on our mortgage - to the point of receiving letters threatening the dreaded "f" word.  I can't schedule another appointment with my pain doctor until we pay the entire amount due to them.  You get the idea.  So, when we say we can't afford something that only costs $5-$10, now you know why.

Even though I know you're all so intrigued with my financial issues (oh the things I do for the sake of helping others)...  Let's move on to the next aspect of chronic financial illness...

Being ill is not cheap!  Before I got sick I never realized how much is not covered by insurance.  As a nurse and/or the average healthy person, I thought that when you get sick, if you have insurance, you're pretty well covered.  I knew the bills still pile up because of copays, deductibles, and co-insurance.  However, I never realized that there are plenty of things that people need when they're sick that insurance just doesn't cover.  I know better now!

The biggest thing that isn't covered by insurance is medical equipment.  I did get an electric wheelchair that was covered by insurance.  However, I had to hold a huge fundraiser (my garage/bake sale in '11) to cover the cost of the co-insurance and deductible which put the cost of the chair at almost $3K.  In addition to that, insurance may pay for the majority of the cost of the wheelchair.  However, they don't pay for what you need to take the wheelchair anywhere - a chairlift for your vehicle.  Those cost about $2500.  Once again, that was paid for by the fundraiser and some generous donations.

Okay, so now I have a chair and a way to get it where I'm going.  However, my house is two stories.  So now we need a ramp or chair lift for our house.  We had a couple of people come over to see what our options are and give us estimates.  It turns out that because of the way our house is set up a ramp would not be realistic (it would take up our entire front yard) and a lift would run around $5K.  (These "K"s after prices are killing me!)  We did well at the fundraiser but not that well.  So that was out of the question.  And, guess what!  Insurance doesn't cover a dime of that either.  In the end we ended up buying a used wheelchair for upstairs (which is where I spend all of my time unless I'm leaving) and we keep my new w/c in my car for when I go places.

If I get a stair lift will I be
as happy as she is?
So far we've found ways around everything, right?  Wrong.  I now have a wheelchair upstairs and downstairs.  Then there's the problem with the stairs themselves.  I am able to walk up and down the stairs most of the time as long as I'm careful and take them very slow.  There are days, though, that I have been out at a doctors appointment or something that wears me out and I am unable to get up the stairs once I get home or I am able to get up the stairs but that last little bit of activity makes me more sick.  Put in a stair lift you say?  Oh, well, I'd like to, but a stair lift that costs over $1K used or $2k new is not covered by insurance either.

When I go somewhere I am lucky to have a wheelchair and a lift in my car for that wheelchair.  My wheelchair is kept in the back of my SUV.  That means that the back has to be opened before the lift can come out and closed after it's put back in.  All of that opening and closing is done manually, by me if I'm by myself.  One more thing that I am able to do for now but not very easily.  Once again, an electric/power liftgate is definitely not covered by insurance.  And that cost definitely requires one of those fancy "K"s behind it as well.

Those are just the big things.  The only "treatment" for Mitochondrial Disease is the "mito cocktail" which is a group of supplements that all mito patients are instructed to take.  Some people notice a difference as they're taking them.  Others (like myself) may not notice a difference on a day to day basis but are still supposed to take them because they may be life lengthening.  The coq10 is the primary supplement.  We cannot just take coq10 from walmart, cvs, or gnc.  If we (mito patients) want the most effective coq10, we have to get it online from a couple of suppliers.  And when taking 1200mg a day, it costs $200 a month.  That's only ONE supplement.  Luckily that's the most expensive one, but it all adds up.  AND that's only the supplements.  My prescriptions cost over $300 a month, and yes, that's with insurance.

Then there's the things that aren't necessary but very important, like eating healthy.  Why is it that eating healthy is so damn expensive but eating junk food is cheap?  That's why everyone in the US is overweight.  Well, that's part of it.  When you're low on money it's very difficult to buy healthy food.  There's also the subject of how easy and fast it is to eat non-healthy foods and that is half of it, but we're not discussing that topic right now.  One thing at a time.

I'm sure I can think of plenty more examples of ways more money would help me live a healthier, happier life, but I think you get the gist.  So, as you can see, finances have a HUGE impact on people with chronic illness.  Not only does chronic illness impact finances, but finances impact chronic illness.  I know I wouldn't be well if I had  more money.  However, I am pretty sure that my health would improve a noticeable amount if I was able to live the way I really wanted to live but can't because of a very limited income and growing debt.

Monday, October 22, 2012

Mitochondrial Disease and death

Tonight I shed tears for another life lost to Mitochondrial Disease.  

This time is a little different than the other times that I hear of someone passing way too early because of this horrible disease.  I have shed tears before, yes.  So that is not different.  Usually, however, if I cry a little over a lost life from mito it's because I'm not in a great spot myself at the time.  I'm either having a bad day emotionally or physically already.  

When I hear of someone passing from mito it is through my network of mito family and friends that I have developed on facebook.  Up to this point I have not known the person who passed or any of their immediate family members.  I have only known of them, if that.  It is still difficult to hear, yes, but not like it is when you know that person (obviously).  This time I am facebook friends with her mother.  Her mother has, in fact, helped me many times with her kind words and her advice.  However, this is not the reason why it's different this time either.

The passing of this mito warrior has affected me more this time because Leslie was 24 years old.  She was married but did not have children.  It is so much more difficult to deal with her passing because she was an adult.  Children with Mitochondrial Disease are not expected to live long lives.  Every year they are with their parents is a blessing.  The parents of children with mito are told by all of their doctors that they will not live to see their 20's and usually they will not make it through puberty.  Some kids... a lot of kids.. will not even make it to age 10.  Everyone with mito knows that it's very often a fatal disease, especially in children and/or childhood onset.  However, it is not usually fatal in adults with mito and/or adult onset.  That is what makes this so heartbreaking and difficult to deal with.

I don't know if the people around me (i.e. my family and friends) realize that this disease can be fatal.  Everyone thinks that this is just something that has changed my life so that I cannot work and I have to use a wheelchair to get around much of the time.  This disease can change at a moments notice, or it can slowly change overtime.  Either way, it's not getting better and, for the most part, not remaining the same either.  I've seen the changes since I was diagnosed.  I am very thankful that they aren't those "at a moments notice" changes.  

Now, I am no where near as sick as many adults with Mito, but that does not mean I do not get scared.  Do I have the same fears of death as someone with cancer might?  No.  But that doesn't mean I don't have them.  I'm scared of leaving my kids and my husband mostly.  Any time I think about death I'm not scared for myself.  I'm scared for the people who love me.  I just do not want to do that to them.  This disease is hard enough on my kids to begin with.  I do not want my kids to have to grow up without a mom completely.  (I say completely because they've lost a good portion of their mom already.)

I do not know the circumstances surrounding her passing.  I do know that Leslie became sick at age 19 and has, therefore, only lived for 5 years afterwards.  My heart breaks for her husband, mom and everyone else in her family and they are in my thoughts this week as they deal with the pain of losing someone they love dearly.

Rest in peace, Leslie Williams.

Friday, October 12, 2012

Chronic Financial Illness, Part I

Being chronically ill is very difficult.  That's what this blog is all about, living with Mitochondrial Disease, a chronic illness, and how difficult it is.  As you can tell by the many things I talk about on my blog, there is a long list of things that make chronic illness hard.  There's the physical aspect; which is the largest part of it, obviously.  Then there's the mental/emotional aspect of it.  There's plenty of that as well.  You all are well aware of that aspect of chronic illness since that's what you hear a lot about.

And then there's the financial aspect of chronic illness.  It is a HUGE part of chronic illness.  Interestingly enough, however, I haven't discussed that part very much, if at all, on my blog.... despite dealing with it everyday.

There's a stigma about discussing finances with others.  It's interesting, too, that I'm okay discussing my poop on my blog for all of the world to read/see, but I'm embarrassed about discussing our financial issues.  Despite the stigma and embarrassment, I've decided to write about the financial issues that surround chronic illness... for two reasons.  One, I had a bit of a realization of our financial situation in regards to my illness last week.  (Which I will discuss below.)  Two, I have had many people tell me that my blog helps them by letting them know that they're not alone.  If anyone who reads my blog is dealing with Mitochondrial Disease, or any other chronic and/or progressive illness, they will understand the financial issues surrounding it.

As I stated above, I had a bit of a realization about a week ago.  Prior to becoming ill I was working full time as a nurse.  I had great health insurance, short term and long term disability, 401K, etc. etc.  All of our medical bills came from infrequent doctors visits, mostly by my daughters (kids are always getting sick), the occasional worry of a broken bone as kids always like to scare their parents with, and, visits with a doctor and/or tests to fix running injuries.

Don't get me wrong, we still had medical bills to deal with.  We still had to make arrangements for payment plans because we weren't able to pay the bills in full.  Can anyone?  However, due to the infrequency of the visits and the low $500 deductible because of my good health insurance, we were able to pay off those bills by the end of the year.  When the new year came around, and therefore, a new deductible, we had either paid off the previous year's bills or were pretty close to it.  I never felt like we were drowning in medical bills.

Here's where my realization comes in.  This is never going away.  Shocker!  I know.  Why am I just now coming to this realization when I've been dealing with this for almost 3 years?  I don't know.  I think it's because up until recently (about 6 months ago) I was still somewhat in denial that this is going to be my life... forever.  I was always thinking (consciously or subconsciously) that this would all go away.  I didn't think about the lifetime effect my medical problems would have on us until recently because at that time we had just fulfilled our deductible and had a long time to go before we had to start over again.

So, with the new year right around the corner and medical bill collectors calling 8-10 times a day, it finally hit me.  We are never going to be able to pay off our medical bills.  We are never going to be able to have a day without collectors calling.  As of right now, we are only able to pay $10 a month to each of the 15 companies that we owe money for medical bills.  It is just enough to keep the large majority of them from sending my account to the collectors.  However, not all companies will accept just $10 a month, and that's all we can afford (actually, we can't afford that even, but we are attempting to make it work).  That is why we are still receiving phone calls from bill collectors.  If we don't pay the $25, $50, or $325 a month that they require, they send our account to collections.

The problem is that we are barely making a dent in what we owe for all of my medical bills and in less than 3 months they will start piling up in large amounts again.  Right now when I see the doctor or have a test done it only adds a small amount to what we already owe.  But when we start over with our $2000 deductible, every time I need to see a doctor or have a test done we will owe 100% of what it costs.   It only takes a couple of months for that $2K deductible to be fulfilled.  So that $2K will be added to what we still owe from 2012.  And with only paying a small amount each month, we will, again, be far from paying it off by the time 2014 rolls around and our deductible starts over again for that year.  I'm sure you can see the visious cycle.  This is what hit me.  Our medical bills are just going to add up and add up through the years.  And, unless we win the lottery, they will never go away.  With my "Type A" personality, I absolutely cringe knowing that we will never be able to pay them off.

The other financial problem with chronic illness is that I can't work.  I do get social security disability, but that's less than half of what I was making as a nurse.  That's not even the part that bugs me the most.  That is the fact that I can never get a raise or find another job that pays better or work extra hours because we're going through a tough patch.  I have ZERO control over how much money I make.  I worked my ass off getting my bachelors degree as a single mother and this is what I get out of it... a lifetime of dismal pay.  (Speaking of college - I'm still working to get my student loans discharged due to my disability.  I haven't had to pay them during the application process so that helps.)

In addition to all of this, my disability just had to hit during a major recession.  So we're not the only ones suffering.  Which means that it's difficult to get help.  We have done everything we can to lower our bills.... while still keeping my sanity.  I say that because we could always cancel cable, movie rentals, and internet to save money.  However, if we did that, we would be paying a lot more money on psychiatrist bills because I would go crazy... seriously.  We have put in a ton of time trying to find a solution to lower our mortgage (and so has my sister, who is in real estate).  It's just our luck.  We do not have a loan that was sold to fannie mae or freddie mac so we don't qualify for any of the government assisted mortgage relief.  Our house would appraise too low to refinance.  Which is also why we can't sell it and move.  We would wind up paying on our mortgage and another one if we move since we wouldn't be able to sell our house for what we owe on it.

The stress that money puts on me doesn't help my health either.

I do want to make one note... if it wasn't for my dad and step-mom, we would be living in a van down by the river.
(If you're a Chris Farley fan, I've included the full video below.  I just wanted to throw this one in right here so people would know where my "van down by the river" reference came from.)
We are SO thankful to have their help.  Because of the generosity of family, friends, and even some strangers, we have been able to keep thing as normal as possible for our girls.  That is very important to my husband and I.

So, Mitochondrial disease doesn't just drain energy, it drains our wallets too.  We are out of solutions and out of money.  We don't know what to do anymore.  How are we going to do this for the rest of our lives? - Money doesn't solve problems, but it could solve my money problem.

Tuesday, October 9, 2012

An Enlightening Experience

Last week has been a difficult week for our family.  At the same time, it has been enlightening.

My husband, caretaker, and children's father was ill all last week.  He was sick for 9 long days.  He has had a horrible sore throat, headache, and extreme fatigue.  Most people, especially the people with chronic illness who read my blog, would say, "Sore throat?  So what!"  You know what?  I would normally say that too.  However, I know my husband.  He does not just lay down and take it easily.  In the 10 years I have known him, I have never seen him this sick and for this long.

The first clue to me that he was feeling absolutely horrible was that he actually let me help him.  I was getting up and getting things for him the majority of the week.  This oh-so stubborn man must be feeling extremely horrible if he's letting me take care of him, despite the fact that I am ill as well.

So, the first half of the week, luckily I was feeling pretty good, above normal by my standards.  You god freaks out there can blame it on god setting us up... I blame it on adrenaline from feeling the need to take care of my family with no help and a lot of rest the week before because of a mito crash at that time.  However, after a few days of taking care of everything around the house and with our two daughters, I was starting to struggle and things were starting to pile up.

Now, my family knows my hubby has been sick.  I even went to a family gathering a week ago Sunday without him, and everyone was asking why he wasn't there, etc.  So everyone, at least almost everyone, knew I was taking care of the kids, house, my husband, myself, etc. on my own.  Everyone must be really busy in their lives right now because I didn't hear from anyone wanting to help.

After making myself sick the night before from all of the activity (fixing dinner, grocery store, gas in the car, showering with my daughter, putting her to bed, etc.), I finally sent an email out to family asking for help or at least suggestions.  Luckily my parents and my aunt came to our aide.  No surprise that that's who it was.  I don't need to go on about our support system or lack there of in some instances.  If you've ever read my blog, you're well aware of that part of my life.

As I said in the start of my post, this last week has been enlightening.  Now, you may all think that it was enlightening because I realized how much my husband does around here since he wasn't able to do it.  However, that wasn't it at all.  I am already WELL aware of how much my husband does around here.  I tell him all the time how awesome he is and how much I appreciate what he does for this family.  I know how screwed I would be without my husband.  I am thankful every day that he has not, and will not, leave me.

"So what was so enlightening," you say?  A few days into his illness, my husband took an antibiotic that made him sick (nausea/vomiting).  For the majority of his illness, especially the first half, he was in a lot of pain in his throat.  I could tell he was really struggling from the pain.  Watching him grimace from pain and listening to him getting sick in the bathroom really upset me.  It's so hard to know that someone you love dearly is suffering.  Especially when you can't do anything about it.  I just sat in bed listening to him getting sick wishing I could do something to make him better.  I just couldn't stand seeing him in pain and vomiting.

THAT is when it hit me.  Not only does my husband and best friend (same person btw) have to take care of the kids by himself, do all of the housework and chores by himself, and take care of me ever since I got sick, but he also has to deal with the emotions of watching me suffer and not be able to do anything about it.  My oldest daughter has to deal with this as well.

I've always been SO appreciative of everything my husband does for me.  He cooks all of the meals.  He does the laundry.  He transports the kids to all of their activities and me to all of my doctor's appts.  He cleans the house.  He works over 40 hours a week.  He finds ways outside of work to make more money for us to pay off medical bills, prescription costs, etc.  All of these things are the obvious struggles of having a wife who is chronically ill.

The not so obvious struggle is the emotional one.  He, and my oldest daughter, have to watch me in pain, vomiting, too exhausted to get out of bed, too weak to walk, and more.  This has got to take a toll on him.  However, I very rarely see that it does.  That doesn't mean it doesn't affect him.  It just means that he is so strong that he hides it from me.  Instead of showing me that my illness is bothering him, he does whatever he can to make me laugh.  He is always trying to make me feel better, even if it's just a quick smile.

I have always thought I appreciate everything my husband, best friend, and caretaker goes through when dealing with this illness.  I now know that I didn't... until now.

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.