Support through this challenging journey

Just as the physical part of this disease is a roller coaster, so is the mental/emotional aspect.

I hate it that everyone thinks that the cure all for the mental/emotional hardships caused by serious/chronic illness is having a positive attitude.   I am always hearing "keep a positive attitude!"  Or, even better, "I have a friend who's mom's brother's daughter's cousin has terminal cancer but she's keeping a positive attitude."  Well, that's great.  I'm glad for your friend's mom's brother's daughter's cousin.  However, that's not me.  I'm not usually a glass half full kind of person.  I know that's not the way everyone thinks I should be, but they're not me.  I'm me.  I am living my life.  I'm the one dealing with the shit that comes along with Mitochondrial Disease, chronic illness, and chronic pain.

I'm happy for those people out there who can be positive even when dealing with illness.  Everyone's different.  You know, I started to type reasons why Sarah Smith might be positive when I'm not.  However, I'm not going to go there.  It is what it is.  Everyone's different.  Everyone's experience is different.  Someone else might deal well with a similar situation.  However, it's just that, similar.  Not the same.  I may have the same disease as someone else who's being positive about their situation, but that doesn't mean we're in the same situation.  A teenager may be able to have a more positive attitude because they haven't lived as much of their life or they don't have to feel guilty for not being there for their kids.  Okay, I said I wasn't going to go there, but I did.  Dammit.

It all comes down to, I am who I am and I'm doing the best I can with what I've got.

Despite all of this, as you can kind of tell by my post Insights and Revelations, I have had more of a positive attitude recently.  Maybe I wouldn't describe it as a positive attitude as much as just moving on and living my life.  Or maybe it's just the lack of depression.  That's a plus.

One thing that I don't think I discussed in that post is the realization that I'm in this alone.  A lot of people might read that and say, "no you're not!".  However, in the long run, yes, I am.  Even if I'm not, I have to think of it that way.  For the past 2 years I have relied on family and friends to help me get through this, despite always being such an independent person throughout my life.  I thought I needed those people to help me get through this.  Well, I may need people to help me get through this but I can't rely on it.

Not only did I feel like I needed the support and help but I also almost expected it.  I have just thought, at times, that because I was sick and going through such a horrible, life changing, event, I should get help from the people who love me... my family and my husbands' and even some friends.  However, this expectation has caused me a lot of mental anguish because I did not get what I expected.  As I have been very grateful for the help I/we've received, I have also been very upset by the help that we haven't received.  I have needed to change my thought process.  I have to be thankful for the help we receive and realize that I can't make people help and/or care.  (I know some people say they care even though they don't do jack to show it and to them I say "prove it."  Seeing us once or twice a year at family events does not show that you care.)

I've discussed the effects people have had on me throughout my disease numerous times on this blog.  Every time I do I find that I can't really explain why people have such a profound effect on me... positive or negative.

Well, yesterday I was perusing the web and came across a website called "Friends of Jaclyn".  Jaclyn is a young girl who was diagnosed with a malignant brain tumor.  The Northwestern University's Women's Lacrosse team "adopted" Jaclyn as an honorary member (she also played Lacrosse before she got sick).  It had such a profound affect on Jaclyn that her parents created this foundation to get other college teams to "adopt" children dealing with severe illnesses.

I thought this was such a great idea.  There was one statement that really stood out to me...

"...it is ultimately the love and support of others that gives people the inspiration and courage to get through this challenging journey." - www.friendsofjaclyn.net

That statement explains why I need the love and support of friends and family so desperately and why, when I haven't received it, it has bothered me so much.  Another statement made on their website is, "Jaclyn's relationship with the players - her adopted sisters - had a positive effect on her happiness and health."

People don't realize how much of an effect the love and support of others can have on a person, especially someone with a life altering illness.  And especially someone like me who has always loved being around people and helping people.

I am trying my hardest to adapt to this new life of mine and to adapt to living it without help.  That's easier said than done.  The help and visits have diminished again recently.  It's not the help I need.  It's not the help I miss.  It obviously makes a difference in our lives if we have others helping us with the kids, chores, errands, and finances and we can really use that help sometimes.  However, we have been figuring out how to do it on our own.  We can't rely on others the rest of our lives.

But the one thing that helps me far more than doing chores or running errands for us is the comfort of knowing that I'm not going through this alone.  Having people to talk to.  Having a distraction from the pain, fatigue, nausea, etc. etc.

Nothing cheers me up more than being able to visit with friends and/or family and knowing that they're here for me.  Whenever the "help", which includes people coming over just to visit, diminishes, I notice myself loosing hope.  I notice myself getting depressed over having to deal with this disease that has drastically changed my life.  I think about all the things I am missing out on.  I start thinking about the future or lack there of.

So for anyone wondering why I have bitched about people not being there for me, read the quote from Jaclyn's family again and hopefully you'll understand.  Needing support while going through a debilitating disease is a lot different from needing support while going through other difficult times in your life.  In most cases, those times will pass (divorce, loss of a job, etc.).  This will not pass.  If it does, it'll be because I've passed.

"...it is ultimately the love and support of others that gives people the inspiration and courage to get through this challenging journey." - www.friendsofjaclyn.net

Mighty Mitochondria!!!  (I'm sure that's not what mine look like)

(As a reminder... I am not speaking to any one specific person (or 2 or 3).  I am just speaking in general.  So if you read this post and think I'm talking about you specifically, I guess maybe you should give some thought as to why you feel that way because I wasn't thinking of anyone in particular.)

Mito Awareness Video

This is a video made by someone on the "Mito Families" page on Facebook.  It's somewhat of a support group for anyone dealing with mitochondrial disease; whether they're caring for someone with it, have a loved one suffering from it, or dealing with it themselves.  It is a wonderful group.

This video is AWESOME!  Please take a few minutes out of your day to watch it.

Knocking on wood

In the last couple of posts I have discussed how sick I have been.  I'm going to change it up a bit....

I have felt, dare I say, good for the last few weeks.  Can you believe it?  I know I can't.  I was so sick for a month.  I had a few days within that month that I felt just okay, but I was really sick for the large majority of it.  Now, I have actually been feeling better than just okay; I have actually felt good for what I believe has been about three weeks.

 I just don't understand this disease.  Part of me says "Who cares what the reason is?  I feel good.  Just accept it and enjoy it."  However, the other part is waiting for the ball to drop... for the shit to hit the fan... for the other shoe to fall.  I even broke into tears when talking to my husband one night because I feel so good.  I know.  That probably doesn't make much sense.  I was crying because I know it won't last.  And for you, "keep a positive attitude" and "have hope" people out there, I do.  The difference is, I'm also realistic.  I have been living with this disease long enough now to know what my body does.

Today I had to test my body a LOT.  I had to pick up my daughter from school because she was not feeling well.  (A migraine.  Poor thing.  I know how that feels and I felt sooooo bad for her.  This was worse than any others she had.)  I knew I was going to have to use more energy than normal taking care of her.  When I got to the school, my chair lift would not go down.  I tried and tried and it just kept sticking in the same spot.  So I had to walk into the school to get her.  Then I had to take her to the doctor.  I hadn't taken her yet for these migraines because they have all gotten better with a couple of hours of rest and advil.  Well, my wheelchair lift didn't work there either.

A lot of people think the wheelchair is just to save me from having to walk.  Oh, it helps with a lot more than that.  Imagine taking your child to the doctor.  You have to walk from the car into the building.  Then you have to stand at the front desk to sign her in.  Then you go sit back down until they call your name (so there's walking from the desk to the waiting room and sitting down and then getting back up again).  When they call your name you stand at the desk while they make sure all of your information is correct and have you pay the copay (standing for 3-5 min.).  From there you go back to the waiting room to sit back down. Then they call your child's name and you have to get out of the chair and walk back to the room and sit down again.  Now this doesn't always happen but I was getting up and down out of my chair to go to the sink to get my daughter a cool paper towel to put on her forehead.  Then there's, of course, the walk back to the car.

See, if I had the use of my wheelchair, I could have avoided using energy for all of that walking, standing, and up and down out of chairs.  It makes a HUGE difference, especially if I have to do it at multiple places.

So, after picking her up from school, taking her to the doctors office, and picking up her prescription (which was easier said than done but I won't go into that long drawn out story), I should have been in the bathroom vomiting followed by laying next to my daughter complaining of the same excruciating headache she had.

However, lucky for me, that wasn't the case.  My muscles were twitching.  My pain was raising rapidly.  And my muscle weakness and fatigue were increasing as the day went on.  But it shouldn't have been increasing... it should have hit me like a ton of bricks.

What the hell????  I don't get it!  I'm not doing anything different that I know of.  I'm not even on the mito cocktail.  I quit taking that when my GI problems got bad awhile ago because I was struggling to get enough food down besides trying to get 5 pounds worth of pills down as well.  (okay, that's a bit of an exaggeration, but it was a lot of pills)

I'm not making any changes, why am I better?  Who cares, right?  As long as I'm better....  Why ask why?  Try Bud Dry.  (budweiser did their job however many years ago with that damn bud dry commercial because every time I use that sentence "Why ask why?", in my mind I say "try bud dry"... props to you budweiser)


So for now, I'm just living my life to its fullest and enjoying this time I have feeling almost human.