Tuesday, May 24, 2011

A Couple Blogs To Share

I have been so busy lately getting everything ready for my Mom's visit this week, haven't had very much time to do anything else.  But, I found a few blogs that I would like to share with everyone.  They are both by people that have been affected by ALS by their parents having the disease.  As a child, it's never easy thinking of the day that you will loose a parent.  Your parents are supposed to be your rock, they are the glue that hold everything together.  You should be married, have kids, etc. before you even have to worry about the day that you have to say goodbye.  This disease is non forgiving.  It is not concerned with the chaos it causes.  I cannot imagine having to live with the parent as you watch them deteriorate, it is so hard seeing my Mom going through this from so far away.  It takes a really courageous person to be able to face this disease and watch it progress.  And for that, Mary, your courage and strength amaze me.

      Mary is a teenage girl whose father was diagnosed with ALS.  That news alone is such a blow, you can only hope for time.  The thing about ALS is that you just never know, you never know how long you have, or what will happen next.  You really can do nothing but hope.  You hope that you have that hopeful time frame left, 3 to 5 years.  Mary's Dad had one of the faster progressing cases, he passed away approximately 6 months later.  I can only imagine the pain and grief that this child is facing.  Well, I found her on the ALS Forums and learned her story.  I've read her blog and I just had to share it with everyone.  Thank you, Mary, for sharing your story with me.  I wish there were a way to make this easier, but reality is that it just isn't easy, and there is nothing you can do to make it an easier.  But, as time passes, I wish nothing but happiness for you.  If you ever need a friend to talk to, cry with, etc. you can come to me.  Maybe if the children of ALS stick together we can help each other through the hard times and celebrate the good times.  This is Mary's Life In A Nightmare...
     My Life In A Nightmare

     Allison is 26 years old and her father was diagnosed with ALS in August of 2009.  I don't know much about her story.  But when it comes down to it, in her time of grief, she is thinking of others.  Her blog is a place where we can go and support one another.  ALS doesn't care about the family, it doesn't care about the children, friends, etc.  It is unforgiving and will not slow down for anyone.  She has chosen to start a teen/young adult support group for the children of ALS.  I know that having a 9 year old of my own, I would never wish her to go through this.  But, now that she has no choice other than to see the progression of this disease in her Grandmother, I know that I will at times need the support of others to help her get through this.  Allison, I just want to thank you for thinking of others in your time of grief.  This is Allison's blog....
     Children of ALS

And with that, I will begin to close this entry.  Mary has a few songs that she found listed in her blog and the words are beautiful so I decided to share.  Mary, I'm not sure of your religious background, and I'm no hardcore holy roller, but I believe your Daddy is looking down and watching you every day.  I'm sure he is so very proud of the strength you show each day as you deal with the loss of your father.  Just know, that although he may not be walking on this earth with us anymore, he is always with you..... So, with that I will leave you to watch the videos and listen to the songs.  I hope you all have a great day, and keep your heads up. 


Saturday, May 21, 2011

Better Late than Never

I am a bit behind the time on this one, but May is ALS awareness month.  Let's all get the word out there that this is not as rare as people may think.  We need to find a cure!!!

Friday, May 20, 2011

What a long day it has been...

     Ok, I know it seems like I whine a lot.. but today it is needed.  I am sick!  Sooooo sick!  Last night I did everything in my power to stop coughing and fall asleep.  No luck until almost 5:30 am this morning.  So there I am sleeping like a baby when all of a sudden another coughing attack hits me.  Bare in mind by this time its 6:40am.  Yep, I got one hour and 10 minutes of sleep last night.  So I cough and cough and cough, which seems like its never going to end, and the pain well lets just say it was bad.  I go into the living room so I don't wake the hubby and sit there as my daughter gets ready for school.  From 6:45 or so till 8:00 am I am sitting on my cough just trying to catch my breath.  It felt like I was drowning.  But I'm a Mom, so I dealt with it till Destiny got on the school bus.  Straight to the ER we went.  By this time I'm light headed and dizzy and just all around weak from lack of sleep, so I'm really in no mood for ignorance.  They take my BP and say oh its a bit high, all I could do was sit there looking at him thinking to myself, I just told you I was worried I was going to die because I could not breath and every time I cough it feels like my lungs are on fire.  Thankfully his questions did not last long. 
     I love our ER.  Most ER's you go in and wait and wait and then wait some more to be seen.  Anytime I have ever gone to their ER I have gotten out and on my way home within two hours.  That includes the wait time in the waiting room. 
     So they bring us back and give me a gown, and I wait literally like 3 minutes and here is the doctor.  That totally reassured me.  We went through the usual talk and questions and this guy actually listened!  It was so nice to have a doctor not just assume that because I am not a doctor that I don't know my own body.  He called for a chest x-ray and they came and got me within 5 minutes.  There really should be more ER's that run like this.  Within 30 minutes or so the results were in.  I have got a viral infection in my lungs.  They gave me a triple dose of steroids and a double dose of a breathing treatment and sent me on my way with my prescription.  This visit was actually faster than normal, we were out of there in 45 minutes.  Yayyyyy!!!
     Here comes my whining and moaning.  My mom is coming for a visit next week and I cannot be sick when she is here.  She is just too susceptible to these things.  The doctor says it could take 7-10 days before I feel any better.  Please God let me be better by the time she gets here.  I really need some Mom time.  The whole visit is planned out.  Thursday is Destiny's 5k run that we will be in the bleachers supporting her, and then Friday is the real fun.  We are having a crawfish boil.  For all of you northerners please go ahead and Google it now.. DELISH!!!!!  As a southern girl living in Michigan, it isn't very often that I get some good seafood.  AND SPICE!!!  Oh God, I can't wait for the spice.  Food is just not the same up here.  I pray that by that time I won't be congested anymore and I can actually taste it.
     Tonight for example the hubby comes to me and says,"Babe, what would you like for dinner?"  Ummmm hellllloooo honey, you know I am completely congested and can't taste anything, so how about you choose dinner tonight.  That was a no go, so now as I sit here typing this blog I am trying to come up with something that is different that sounds good.  I have no idea.  Just drawing blanks.  So, I guess I should probably wrap this up and figure something out.  Just wanted to update the blog with whats up today.

Till next time....


Thursday, May 19, 2011

One Day @ A Time

     A couple years ago, my Mom started having some issues.  We didn't pay much attention to them because you never think that something like this will happen to you or your family.  It started with her left leg.  She would say that she just couldn't get her leg to do what she wanted it to do.  She was slow walking and you could tell she was very careful with every step she made.  As much as it sucked, we dealt with it, thinking nothing was seriously wrong.  After all, if it were something serious wouldn't there be more symptoms by now?  Well, I got my answer.  She then began having issues with her balance.  She had fallen outside, striking the side of her face, getting one hell of a shiner.  The day I saw that bruise on her face, I was terrified.  How could that happen to my mom?  She is my hero in every aspect of the word.  There was nothing she could not do.  She was strong physically, mentally, and emotionally.  She was my rock, my anchor, my best friend.     
     Her symptoms began slowly progressing.  Well, it seemed slow at first.  First was the left leg, then the balance, then the right leg, her arms, her hands, occasionally her vision, uncontrollable emotions, and then her speech.  She made appointment after appointment, with general practitioners and neurologists.  She and I would just Google her symptoms trying to come up with an answer.  Any answer.  There were just so many possibilities.  Some possibilities we could deal with and others we prayed it wouldn't be.  She had blood test after blood test, MRI after MRI, EMG after EMG, and still no answers.  She was told that it could possibly be one of a few things.  The main ones were MS, PLS, or ALS.  Her symptoms could come from any of those.  It was nice to get it down to just a few possible diagnoses, but we still needed to know.  We needed to prepare ourselves for the future.  We needed to know what was to come.
     She finally found a doctor that specialized in all of this.  And as fate would have it, this guy graduated and now taught at the college my little brother now attended.  He started from the beginning with all of the test, ran each and every one of them.  He also did a spinal tap.  In March 2011 my Mom went in for another appointment.  That appointment changed our lives forever.  Dr. Brown is now 95% sure that she has got Amyotrophic Lateral Sclerosis (ALS - more popularly known as Lou Gehrig's Disease). 
     I got the news in an email late one night.  Before anyone jumps to any assumptions, we have an understanding, its hard for her to talk and much easier to type, so we email a lot, it's just like talking on the phone for us.  I remember that night like it was yesterday.  I was about to go to bed and decided I would check my email one last time and just send her a little note letting her know I was thinking about her and to tell her I love her.  Instead, there was an email waiting for me to open from her.  She informed me of Dr. Brown's medical opinion and asked me to pray, which I did.  But then in her true style she wanted to make sure that everyone else was ok.  Although the tears ran down my face and my heart hurt like I never thought it could, she didn't want us to be sad.  She wanted us to be ok before anything else.
     I remember lying in bed that night asking God why.  Why her?  She was such a good person.  She is a Christian, a great mother, always thought of others before herself.  She is my best friend.  What did she do to deserve this?  I was sad, angry, and frustrated.  I just couldn't figure it out.  I couldn't call her the next day.  I knew I would just cry, which I knew she didn't need, so I had to wait a day to speak to her.  I still cried, but hearing her voice made me feel so much better.
     As much as everyone says to have faith and believe and pray, you still have to be realistic.  I'm not dumb, so I won't pretend to be.  I know what we are looking at.  I know the battle that lies ahead, but I also know that I will be by her side till the end, and I know her, she won't go down without a fight.  She can't just give up, I won't allow that.  As much faith and prayer I have, I realistically know that my Mom will most likely be taken from us long before her time.
      I think the hardest part about all of this is that I am so far away.  I live 6 hours away from her.  Money is really tight these days, so we usually visit 2 or 3 times a year.  It isn't as often as I would like, but I think it makes those visits that much more precious and enjoyable for us.  I cling to every moment when she is here or when I go to her house.  I don't leave her side.  We love to sit down and talk about old memories, new things going on in our lives, and we laugh, we laugh until it hurts.  I will never forget the laughter that would just pour out of us.
     Life handed us lemons, but we are trying our damnedest to make lemonade.  She is doing the best she can right now, just making due with what she's got.  She is thankful for everyday.  She can only speak for a few minutes before it becomes too hard to talk.  She's now got a wheelchair and walker.  She isn't the same Mom I grew up with, but she is still amazing in my eyes.  She raised me to be the woman I am today, and I will make her proud.  She is my hero.