MS Sucks

I haven’t talked much about the wife and her medical issues.  But I feel that I need to.  For those that don’t know, she was diagnosed with MS (Multiple Sclerosis) a little under a year ago.  While it was nice to finally have a diagnosis for all her issues, it hasn’t been fun learning about MS.  The fact that lesions are covering my wife’s brain scares me.  The facts that what this disease could do to her, scares me.  The fact that we are going to have to start daily injections of meds scares me.  The fact that in the future, she might have to rely on me, scares me.  In other words, there are a lot of things about this disease that scare me.

But what doesn’t scare me, is the fact that my wife will keep fighting.  Even though she is in extreme pain, she takes care of things around here.  She gets my kids up and to school every morning and picks them up every day.  Even though it may put her down for the rest of the day.  She keeps fighting every day when she takes showers and it absolutely drains her body of all energy.  Just a shower does that to her.  She cooks for us almost every day.  But in order to do all this, it takes a toll on her.  She has to lie on the floor multiple times a day just to stretch her back.  She needs a back rub almost every night.  When she stands in the kitchen too long, she’ll all of the sudden need to sit down because of a sharp pain in her neck.  She has to use a wheelchair when we go to functions because she can’t handle sitting in the chairs provided.  Or she has to use a wheelchair if we need to go shopping because she can’t be on her feet too long.  And I haven’t even touched on the mental issues like memory loss, or the brain fog she suffers through, or the migraine’s.  Yes, she does a lot for us.  And yes, she suffers a lot for us. 

I have to pause typing this so she can lay on the floor.  Why does she need me, I have to curl my fingers so she can put my finger tips at a certain spot on her skull which helps relieve the pressure in her spine.

I also had to massage the base of her skull because it hurts.  She always hurts.  We need a cure for this beast.  And that’s where you all come in.  There’s a group of us “Team Laws” that are walking in the annual MS Walk here in town.  Cheri will walk.  It may cost her the rest of the day but she is bound and determined to make it.  What I need from you, donations.  I don’t care if you donate $1 or $500, we need it all.  So if you could find it in your hearts to donate to our team to help find a cure for MS, we would be eternally grateful.  All the donations are taken directly from the National MS Society website so you can be sure who gets your money.  It’s the only time of the year that I ask all of you for help.  Please help find a cure for this horrible disease.  Click Below.

I want to help.

We can also turn in donations if you would prefer to just give us a cash or check.  Checks can be made out to the National MS Society.  Thank you for taking the time to read all of this and thank you for your continued support.

If you can’t spare a few bucks, pass this post on.  Via Twitter, Facebook, Tumblr, Wherever.  The more that see it, the better the chances are that we can fund the search for a cure.  There are a few buttons below this post to share, please use them.

Typing it out

Just a quick post to let you know I haven’t disappeared, entirely.  It’s been a busy week and yet it hasn’t.  Just been doing the usual stuff, Work, Girl Scouts, Work, Boy Scouts, Work and more Scouts.

Trevor had his pinewood derby today, or I guess yesterday since it’s after midnight.  It was pretty good, Trevor looked like he had a blast so it made everything worth while.  But I’ll discuss that later tomorrow (or today).  And I don’t really have anything to talk about now.  To be honest, I’m just kind of typing.  I feel like I have something to say and I hope it’ll just come out.

I guess it’s a good thing I don’t really have a whole lot of people interested in reading this blog so I can do a post about nothing.  Hey, it worked for Seinfeld didn’t it.  And just so you have my stance on Seinfeld, there were some hilarious episodes, but all in all, I didn’t really care for it.  I’ve caught episodes here and there, some awesome (“I WAS IN THE POOL”) and some pretty stupid ones.

Cheri has been struggling with her MS and other crap.  Between the fatigue kicking her ass most days and the pain in her backass, I wonder how she functions.  But she keeps pushing through it, usually for too long.  Today was a little rough on her.  The pinewood derby lasted about 5 hours, including lunch, so we brought her wheelchair in so she could sit somewhat comfortably.  It certainly isn’t comfortable, but better than those chairs they had there.  The worse part for her, I think, was some of the meds had made her sick, she had to go to the restroom because she thought she was going to throw up.  It eventually passed, but it certainly wasn’t fun for her.  She suffered through it like the trooper she is.  Then we get home and her daughter was up to her usual crap.  So basically Cheri dealt with heat and stress, like most days.  I did realize today why it bothers me so much that Skyler walks all over Cheri.  One of the attractions I have towards Cheri when we met was that she didn’t generally take crap from anyone.  She doesn’t go looking for confrontations and will try to avoid them, but she won’t back down from one if brought to her.  I like a woman with some backbone.  So when Skyler talks down to Cheri and Cheri backs down, it tears at my heart some.  Skyler takes advantage of her mom’s condition because Cheri has to avoid stress so she just backs down and in turn, Skyler gets whatever she wants.  She’ll be off to college soon and I guess I’m a bad parent because I’ll be glad when she’s gone.  She’s probably the main stress in Cheri’s life right now.  That and money which seems to be a big stresser lately as well.  But I’m not going into that today either.

I’m also having trouble getting over the fact that Cheri just thinks I like to get Skyler in trouble.  I asked a awhile back if she thinks I care about Skyler or I just like to get her in trouble.  I never got a response, which of course, tells me her response.  I told her if she thinks I won’t be following my own kids and trying to catch them in lies like I did with Skyler, then she doesn’t know me very well.  Because I will be on them like I was her.

So basically I can’t help her with the heat, as much as I would like to control the weather, I can’t.  And I can’t help her with her stress, I only make so much money and she won’t let me help with her daughter.  So for me, caregiver means helping with chores, rubbing her neck and backass and just being here for everything else.  I can’t help with her 2 main stressers.  So I guess I get a fail in the caregiver department.

So what we learned in the last 2 paragraphs is I suck at being a step-father, and I suck at being a caregiver.  Hooray is my life.

I guess I did have something to say.  Good thing my next post is about the pinewood derby, I promise it’ll be more positive than this one.  Maybe I should just go to bed.

Dead, Insane, and MS

I love that title, because it all has to do with MS, but yet it doesn’t.  Continue reading and you’ll see why.

I’ll probably lose all the women readers here but did you see “The Walking Dead” last night.  That is by far my favorite show on TV right now.  And most of the guys I talk to love it.  I have yet to come across someone that said, yeah, I watched it but it wasn’t that good.  Either you haven’t watched it, or you love it.  Now the girls might be a different story.  My wife doesn’t like the gory parts and the first few episodes where they were trying to get out of the city were pretty gory.  But now that it has settled down to more of a drama, I think she likes it.  Not loves it, but she likes it.  My brother called me the other day talking about what he heard about it.  Then this morning I was commenting on a couple of posts on friends walls on Facebook about it.  I couldn’t tell you the last time I did that with a TV show.

Insane in the Membrane

I was reading blogs at work and one of them had mentioned the show “Hell on Wheels” which if you’ve seen it, is a western.  And anytime a western is mentioned, this songs kicks me in the head.

I wake up in the mornin'
And I raise my weary head
I got an old coat for a pillow
And the earth was last night's bed
I don't know where I'm goin'
Only God knows where I've been
I'm a devil on the run
A six gun lover
A candle in the wind, yeah

And of course, the chorus.

I'm goin' down in a blaze of glory
Take me now but know the truth
I'm goin' down in a blaze of glory
Lord I never drew first
But I drew first blood
I'm no one's son
Call me young gun

I love that song and I think of western’s because I love “Young Guns” and it’s the main theme song for the movie.  I had that song in my head all morning until I left work.

MS Sucks!!!

Cheri had her day cut out for her.  She had an appointment with her Pain Specialist first thing this morning, then after that appointment, she had to go to two different places to have blood drawn for two different doctors.  I don’t know how she keeps them all apart in her head.  She’ll start talking about a doctor and I usually have to stop her and ask what that particular doctor does.  Pain Specialist, Endo, Neuro, and a couple of more.  I get lost trying to figure out which one she’s talking about.

We had a meeting with a new Neurologist today.  We weren’t happy with our other one, he seemed to want to do what he wanted to do without listening to what we told him.  He was so hooked on what he wanted to do that when we would tell him that it wasn’t working, he didn’t care.  It’ll get better in a couple of week, it’s been freaking 6 months.

We went to a conference or meeting with a local Neurologist who is also a MS specialist.  We both really like her, she listened, she suggested things.  She took time with us, which is a main thing.  She’s going to put Cheri on Copaxone, so as soon as the insurance is cleared and a nurse shows us how to use it, she’ll start it.  Not sure why we need the nurse being we’ve done 4 or 5 different injections already so we pretty much know what we’re doing.  These will be daily so Cheri won’t like that.  I won’t like that, because I hate causing her pain (regardless of what she says) but it has to be done.

I’ve been reading some other MS blogs, patients and caregivers, and I guess I have to feel lucky because right now, she isn’t as bad as a lot of people.  And I can’t imagine these people being in more pain than Cheri is.  She hurts with everything she does, and these other people are even worse than her.  It’s a little scary to know what could happen.  Everybody has MS in different ways so she may not get any worse, but chances are, she’s not going to get any better.  And that’s what scares me the most, the unknown.  We’re doing everything we can to keep her healthy and as active as she can be.  We’ve purchased a wheelchair for those trips to the mall or someplace where we do a lot of walking.  And while I know she absolutely hates being in it, she uses it when she needs to.  We’ve taken it into the schools for functions where she knows the chairs will kick her ass.  So if anything, she’s using it to save her backass.  BTW – Backass is what we call her lower back and upper ass.  That’s where she hurts the most, and all the time.  I rub her anytime she asks and she says it helps, but it certainly doesn’t take the pain away.

So that’s where we are now.  We’ll see what happens with it.  We do a lot of that, wait and see.

Place in this World

I’ve been trying to find my niche for this blog.  I’ve decided recently to start writing more.  I’ve been searching for other blogs for some inspiration.  I’ve found a bunch of “Mommy” blogs that I’ve started following.  Lord knows, I need help when it comes to parenting and I tend to like the blogs that tell it like it is.  That show the other side of parenting.  That prove there are no specific rules to raising kids.  That other parents are just trying to survive their kids.  Because that’s how I feel at times.  And it’s so nice to know that I’m not the only one lost when it comes to doing it.

The mommy blogs were easy to find, you find one, you find them all. Between their blog roll’s and the awards they like to give each other with rules that you have to plug other blogs. I found a crap load of them in no time. I’ve added some to my blog roll and eventually I’ll add the others. If blogger let’s me that is, I’ve had issues adding my blogs to my blog roll on “My Sports Obsession” so who knows.

I’ve already followed sites that humorous because let’s face it, I love to laugh.  That’s where a lot of the pics and toons that I get for “My Kind of Humor” post.  And I’ve found my niche in the sports and sports cards world with my other blog “MSO”.  But what I would like to find is some father blogs, there has to be some out there.  I’d like to read some posts on parenting and other things from a guys point of view.  I follow a few written by guys, but I would like to find more.

I’d also like to find some “Caregiver” blogs of spouses of MS patients.  I’d like to connect to some other’s that are in my position as well.  While I don’t really consider myself a “caregiver” to my wife, it is a label I have and will probably have to accept more in the future.  I joined a forum and enjoyed it for a little bit, but I would like something like the parenting blogs, where they talk about their experiences.  Where as the MS forum, someone asks a question, a bunch of people answer.  While I find it useful and helpful at times, I would rather follow everyday lives.

So if anybody out there has some suggestions, plug away in my comments section and I’ll check them out.

Took Trevor to Boy Scouts tonight.  I’ll give the Troop leaders credit, there’s no way I could deal with that many kids, let alone, all boys even for just an hour.  I’d be cussing them out in 15 minutes.  SHUT UP AND SIT DOWN!!!   INSIDE VOICES!!!!   AHHHHH!  I would have been pulling my hair out, if I had any left.  Like I said, I give the troop leaders credit.

What I’m curious is why they are immune to that cafeteria.  Because every time I get in there, I start yawning, and can’t stop.  Which of course, makes me tired.  Then I come home tired, it sucks.  We meet at an elementary school so maybe they pump gas in to keep the kids calmer or something.  They need to shut the gas off after hours.  It apparently doesn’t work on the kids anyways and why would you want to put the parents asleep.  We all snore and drool, it would be a bigger mess for the maintenance crew in the morning if they zonk us out.

Tomorrow is Friday, the kids will be going to their mother’s after school.  Samantha is supposed to have a Girl Scouts thing on Sunday.  They are just getting together at the local mall and taking kind of an aerial view of all the Girl Scouts in the shape of a leaf (GS logo).  You’ll be able to spot my daughter in the photograph, she’ll be the one with the greasy hair since she doesn’t shower enough at her mom’s.  She’s supposed to wear a green shirt as well so I won’t be surprised if she doesn’t have that on.

I could never take the kids away from their mother, but there are a lot of times I wish I could.  I don’t worry about the kids safety with her.  But I don’t trust her to “do the right thing”.  In the end, it will hurt her relationship with the kids.  And while I look forward to that, I don’t look forward to dealing with the aftermath, the kids emotions when they figure it out.

Until then, I will enjoy my weekends kids free.  I love my kids, but it’s nice to have the place to ourselves.  And it usually is to ourselves since Skyler is usually running around with her friends.  Cheri and I will be kicking it here, we are both homebodies, we love to just sit around and veg.