ALS is exhausting...

This weekend I decided to go online and look some things up about ALS. I have had some questions and thought it would be easier to just look them up then to wait for my dads appointment. Such a bad idea.

Let me start off by saying that there are two types of ALS.

There is the sporadic which accounts for 90-95 percent of all ALS cases. This is where ALS just hits out of the blue for unknown reasons. There is no family history, the average age is about 55 when someone is diagnosed, and vets are TWICE as likely to get this type of ALS. They don't yet know why vets are more likly to get ALS than civilians but some reports I read said it might be something to do with the mandatory vaccines and or the chemicals used while in war.

And then there is FALS. This is when it runs in the family. When two or more people either have or had have ALS. This accounts for only 5-10 percent of all ALS cases. And most of the time the average age of diagnoses is about ten years younger at about 45. In this case the person with ALS has about a 50 percent chance of passing it down to their children.

I am not sure what happened but when I started reading this on my phone (this was the first time I have read about there being two different types) I didn't realize that I was reading about FALS and not sporadic.

So I walked away thinking that I had a 50 percent chance of also getting ALS. I literally walked into the garage (I was sitting outside with my husband while he was working on a project) and broke down.

How could I have a 50 percent chance of getting this horrible disease?

And what about Ryan? Can I now pass it down to him?

I was devastated.

I spent about the next thirty minutes crying uncontrollably.

And then I don't know what (I think God gave me a light bulb moment) but I started thinking about what I just read and went back to it.

I would say luckily but I hate using that word with this situation.

But my dad has all the signs that this is sporadic. He was 58 when diagnosed, he is a military vet who was in the Gulf War, and there is not other signs of ALS in our family.

Plus, FALS is really rare.

If it's sporadic it means there is no gene that is passed down so the chances of me or my brother getting it is zero to none (from what I understand and I have read this stuff a million times).

Which also means I not only will most likely not get ALS but that I won't pass it down to Ryan either.

I do feel relief. So many horrible thoughts were going through my head.

But only so much because my parents still have to go through this.

And me and my brothers still have to go through this.

(One of my brothers is adopted so even if it was FALS he wouldn't be involved. That's why I said brother.)

I am still heartbroken.

My dad still has to go through this.

I hate it.

And I am exhausted thinking about this.

The fear that this initially put it me was overwhelming and I only dealt with it for about thirty minutes before I went and reread what the article said. It literally took me all weekend for my anxiety to calm down.

I can't imagine what he is going through.

And I am staying off the internet. This would have never happened if I would have stayed off it in the first place.
 

Wednesday Reads...

If you know me in real life or even follow me on Twitter you know how much I love reading. Every night after the hubby and Ryan go to sleep I read for 1-2 hours. Sometimes even longer if I am not tired or the book is really good.

So yesterday there were several books that came out that I bought as soon as I woke up. And I figured that I would share them with you since I always like seeing what other people read.

The first is Rules of Beasts by Danielle Paige.

She is the author of the Dorthy Must Die series all of which I have read and loved.

Wizard of Oz has been my favorite movie since I have started watching movies. One of my mom's favorite stories is about when I was five and how I would request to watch it over and over again. She said it would be on our TV all day.

Well, these books are a twist on the Wizard of Oz story written from different points of view.

And I want to add that these were the first books that I have ever read that were outside the mystery, chick lit, memoir/biography genre and I am so glad that I decided to try them because I have just loved seeing what Danielle has come up with.



Conviction is written by the prosecutor of the Jodi Arias trial.

I know there were a lot of people who followed this story on the news and I did too.

I am excited to read about what happened behind the scenes from the lawyer who put her behind bars.



Last but not least is written by Sue Klebold. She is the mother of the Columbine killer Dylan Klebold.

I still remember where I was when I saw the news about this happening. My brother and I were in our living room and I was just about to leave the house to go to work. But when breaking news interrupted whatever we were watching on TV I stopped to see what was going on. I was a senior in high school and just couldn't image that someone would take a gun into school and shoot people.

I can not imagine what life must be like being the mother of one of these killers. And that is why I want to read this book.

(She just did an interview with Diane Sawyer that I have not yet watched. I have it recorded but want to read the book before I watch.)



That is what will be on my nightstand for the next couple of weeks. What's on yours?

My dad had a stroke...

Yesterday was a hard day.

I don't talk about my dad on Twitter very often and I don't have a reason for that but I just don't. In all honesty I don't talk about my dad with anyone but my husband, mom, and two brothers.

For those of you who may not know my dad had a stroke about two and a half years ago. After that he has been diagnosed with having ALS (some of his doctors disagree with this), having mini strokes, and some sort of neurological issue.

He refuses to go back to the doctor to have further treatments or test to see what is going on. I think this is because he is scared which I can understand because we all are scared. But at the same time I can not and will not force him to go. As much as I want him to go back to the doctors at the end of the day it is his own choice. (This doesn't mean that I will stop trying though).

But seeing him now just breaks my heart.

My dad was in the Army for 21 years and was literally the strongest man I knew. He was confident, out spoken, and fun to be around (most of the time). He was the one I would go to for advice or if I needed someone just to have my back. This list could just go on and on...

But now things are so different.

He can't talk anymore. He writes what he wants to say in a book and most of the time it doesn't make sense. Like he will want to write "taking the truck in the morning" but instead he writes "waiting the trucj" (and the misspell is on purpose).

He drools. And it's almost a constant. Sometimes he doesn't even know that it is happening and it just drips down his shirt.

One day he came over to my house just to visit and help get Ryan off the bus. I told him that his bus would be here in about ten minutes. About a minute later he got up and just left. He gave me a thumbs up and shook his head when I asked him if he was leaving. It was like he forgot about getting Ryan off the bus even though we had just discussed it.

He has a hard time buttoning his clothes, cutting his food, putting on his belt, turning the keys for the truck (driving is a whole different issue that I will not get into here), and so on.

When sitting with him he will just point to random things. I am not usually sure why he is pointing but I shake my head and smile like I know exactly what he is talking about.

He and my mom went grocery shopping the other day and she said he had a hard time picking up a 24 pack of water. He struggled picking it up and couldn't get it in the cart without her help.

This made her cry when she called me the next morning and told me. She cries so much when we talk and I wish I could just say something that would take all of this away for both of them.

There are more things that I see but these to me are the most important or stand out the most...

So yesterday after we ate lunch I dropped him off at his house and his neighbor was outside.

I have known the neighbor for about twenty years. She came to my wedding, the hospital after I had Ryan, and has just always been someone in my life.

And while I consider myself close to her it's not like I have ever gone shopping or out to lunch with her. Usually the only time I see her is when I am going in and out of my parents house and we stop to talk.

After my dad went inside she walked up to my truck and said she wanted to talk to me about my dad.

At first I didn't mind because she is their neighbor and has seen some (but only SOME) of what has gone on.

She starts to tell me that we need to get together as a family and MAKE my dad go to the doctor. She said that he doesn't have the mental awareness to make that decision on his own. That she has gone through this so many times and knows that the person who won't go to the doctor has to be forced to go no matter what they say.

And then she added "you guys are just letting him get away with it and just sitting back doing nothing about it and letting him get sick".

I swear I saw red.

I told her that she needs to remember that he is my dad and that I would never just sit back and let him get sick and do nothing about it. That she has no idea what conversations go on behind closed doors and that we constantly talk about him going back to the doctor but that we can't make him. That I can't tie him up, throw him in my truck, and force him to go talk to the doctor.

And when we do talk to him about going back (which is often) he just shuts us down. Refuses to even talk to us about it.

I don't know how much of my response she actually listened to but she continues to go on and on and on.

Out of respect for my parents I kept my cool and didn't tell her she was out of line and where I thought she could go with her opinion.

But I did tell her that I was done talking to her about it.

She says okay and then continues with the conversation anyways.

Then she tells me that if we don't do something about my dad he is just going to wither away and die.

Why the hell would she think it is okay to say that to me??

I told her that if she doesn't think I worry about that she is delusional. That I worry about him all the time and that the thought of him dying breaks my heart.

And that just last month both my brothers and I were talking about this in the driveway and I broke down.

I mean he' s my dad. Why why why do you think it's okay to say this to me???

So again I tell her I don't want to talk about it with her anymore. And yet she continues on and on...

Then she says that she thinks my mom is in denial and thinks there is nothing wrong with my dad.

And I told her that is so untrue and that I was done talking to her.

She somehow finally got a light bulb off in her head and asked if I was mad.

Ummmm, yes, actually I am pissed.

I told her that she doesnt hear the weekly conversations I have with my mom where she is crying because she is so worried about my dad.

About how my mom worries about what my dad will be like just a month from now because he seems to be going downhill so fast.

About how she worries about being a good caretaker and how she can't believe she is already a caretaker when they are still so young. 

I finally told her that I was done speaking to her and drove off.

There are so many things wrong with what she did and when I pulled away I was shaking I was so mad.

Oh, and just to add my nine year old was in the backseat listening to this the whole time.

Yep, even the part where she said my dad was just going to wither up and die.

Thanks for that.

Now I have to explain to my son that grandpa is getting sicker and that we are just all worried about him.

Why do people think they can just say anything they want to someone? And why didn't she stop after I told her SEVERAL times that I was done talking to her about it?

I am so unbelievably worried about my dad but I don't think I should have to say that to anyone. If you know what he is going through I would think that would just be common sense.

And why the hell would you say that we are just sitting there letting it happen. Yes, you're right. I wanted my dad (and my sons ONLY GRANDPA) to have a stroke and be this sick.

I want to stay up endless nights worrying about if he is depressed, scared, or even knows what is going on. I want to stay up at night worried if my mom is crying herself to sleep or sleeping at all that night.

I am just so full of every feeling right now. I am mad, worried, hurt, pissed, and just want people to think before they speak.

If it's not helpful and you don't know the whole story stay out of it. Or just give some nice words of concern and be done with it.

ALS?

I have stepped away from this blog for longer than I intended to. But life just gets in the way sometimes and things become more important.

But blogging has a way of being a cheap version of therapy. At least when I am able to find the words to say how I am feeling.

Back in November 2014 my dad started slurring. It just seem to happen one day and we told him that he needed to go to the doctor and have it checked out. He thought (and I agreed) that it had to do with him just having a tooth pulled. But as the days strolled by the slurring became worse.

He did go to the doctor. And the doctor sent him to the ER because he was worried that he had had a stroke. Strokes run in both sides of my family (his mom has had four) so this was really scary.

While at the hospital the doctors ran just about every test that they could. My dad joked that during the CAT scan they found an extra brain if I needed one.

The doctors concluded that he had some sort of muscle disease because nothing showed on up on the MRI, CAT scan, or other test. He would just need to take some medicine and do some speech therapy and he would be fine.

We were all relieved.

Then he started having a hard time swallowing. And then a couple of weeks ago the twitches in his arm began.

What the heck?? This was just suppose to be a muscle disease.

So back to the neurologist he went.

And the neurologist said that he suspected ALS.

My parents came over the next afternoon to tell us. As soon as they walked through the door I knew something was wrong.

ALS. No, that isn't what it is. Because ALS comes with a death sentence.

And my dad still have to see Ryan grow up. (That is where I always break down)

No, no, no, no, no, no, no, no, no, no,no......

No. It's not ALS. My dad can't have that.

He went to have another MRI and CAT scan done yesterday.

His family doctor said that it could be ALS but it also could be many other things.

And he said it was irresponsible of the neuro doctor to mention ALS before all the test were done.

We are hoping the MRI/CAT scan will show something. ANYTHING. That doesn't come with a death sentence.

A pinched nerve.

A herniated disk.

Something wrong with the spine...

Shoot .... I'd even be happy with a stroke at this point.

Isn't that weird.

To be happy that someone had a stroke.

A stroke would be better than ALS though.

Anything seems like it would be better than that.

But through all this I am okay.

Scared to death for my dad but okay.

I have to be okay.

I still have an eight year old boy who needs to see his mom happy and dealing with it. Of course he will see me have my moments but not on a daily basis.

If this is ALS we might be fighting this for years.

And my boy deserves a great childhood. And that includes a mom who isn't depressed, walking around like a zombie, or and crying everyday.

I need and have bucked up.

And to be honest I really am okay. I feel calm.

My parents needs me to be okay. My dad needs to see us still smiling, happy, and just being there for him whatever that might mean in the future.

This weekend the whole family got together for a movie and pizza night. It was one of the best things that we could have done. We laughed really hard and watched Family Feud. Then we made fun of my sister in law who kept answering underwear to every single question.

I am able to still laugh at the crazy things my husband says.

I feel like through all this chaos and whatever you want to call it I am still able to live.

So tonight when my hubby comes home we will talk about his work.

And this weekend I will take Ryan to go see that movie with the purple alien (I forget the name) and maybe go eat lunch at Red Robin.

Life moves forward even if sometimes it feels like your heart might stop beating.

One day at a time.

One doctors call at a time.

And one prayer at a time.

Ugh.

Dieting is so hard.

Every morning I wake up and tell myself it's a new day just to be sitting with a gallon of ice cream that afternoon.

But food is so good. I mean onion rings, grilled cheese, french fries, sweets, soda. I mean yum!

But I have to start somewhere so today is the day. Today is the day to start taking my life back by putting the ice cream down.

I am such a sweet eater that I will allow myself some sweets throughout the day. Okay. One sweet a day. Seriously. One sweet a day. But what I like about that is that I will really cherish that one moment when I am eating that sweet whatever it might be that day. It will give me something to look forward to and I won't feel guilty because I'm on my diet and sticking to my plan.

This is what I did to lose my first thirty pounds and it will be what I do to lose another thirty. And then I will be at my goal weight.

I keep telling myself that another thirty won't be that hard to do as long as I stay focused and just realize why I need to do this.

For my health and for Ryan. I already see my eating habits in him. He doesn't eat sweets but he is such a picky eater. He tells me he doesn't like everything before he has even tried it. The child could live on hot dogs and cheetos.

I also really need to start exercising again. I stay pretty busy between Ryan and the dogs but I could do more. So I am charging my fitbit again as we speak and am going to make my goal of 10,000 steps every singe day. It's really not hard especially if you just march in place while watching your favorite show which is what I do a lot of.

And I think it helps because instead of eating because I am bored I am walking and doing something for my health.

And yes. This is my millionth time to restart my diet. But I think most dieters go through this. They have their ups and downs but the focus is trying to have more ups than downs.

So with my chin up (thankfully I still only have one) I am going to the park with Ryan and starting on my 10,000 steps for the day.

New Wreaths

Some new wreaths just went up on ETSY. Let me know if you are looking for a certain theme or colors. I love making custom wreaths : )

A new week...

Oh, how I am glad that this weekend is over.

To say it was a rough one is an understatement.

I would go into more detail but frankly I don't want to think anymore about it.

Nothing too dramatic. Just one ounce of bad luck after the other.

Like losing my wallet and finding it after I looked for two hours and cancelled all my cards.

What I do want to think about though is my new FitBit which I am so excited about.

I've already had two. One lost at a water park and the other stopped working. This time I just will make sure to keep my receipt.

And this thing is one of the best motivators.

It makes me want to reach my step goal and also beat my steps from the day before.

Yesterday was crazy busy though so I ended up with 11,734 steps. I doubt I will beat that today. I am hoping for kinda a relaxing day today after the weekend.

The new puppy helps too. I chase her around the house more than I do anything. And in about two weeks we are getting another one so it will be twice as much work.

But anyways.

I am happy that I seem to be back in the groove. I mean after doing such a great job exercising I don't want to come home to pig out.

But I do have ice cream in my freezer today that I plan to eat while watching the new RHONY. But it is a smaller version of what I usually eat so I call that a win.

And I am going to start a FitBit post and maybe linkup just to keep y'all updated and to keep track of my results.

I am hoping with the FitBit and going to the Y that the last thirty pounds I have to lose will just melt off.

Yeah, I laughed at that too….

Anyways.

I wanted to post a cute picture of a FitBit but then I found this and I just couldn't pass up posting it here.