De’Nile.. not only a river in Africa..

I think that some times inside, I’m like that little kid you would see at a grocery store throwing a temper tandrum… Kicking and screaming and fighting the whole way…

Not vocally mind you, and I don’t think this struggle is appearant (least I hope not) to anyone but me, but it goes on none-the-less.  Growing up, I never imagined MS being a part of my life, but then who would?  I don’t want to veiw myself as sick, or less than able to accomplish a given task. It is frustrating that sometimes – what used to come so naturally, I now have to spend time “convincing” my left hand/arm to do as I instruct, or pay more attention to the placement of my feet, because I can no longer trust that whatever they “feel” is accurate. I used to dance.. I don’t attempt it anymore.. but who knows.. maybe thats a good thing.  🙂 .. (see I crack jokes, but it actually does make me kind of sad sometimes.)

For someone who has always kind of been a “Mind over Matter” and “Cause and Effect” thinker, it can be entirely frustrating that this disease doesn’t work that way. It is so unpredictable, and waivering. Not something you can put your finger on, or neatly organize or rationalize out the question of “Why did this happen?”  I really dislike things like that. I tend to want to know why, and know how to prevent it from happening again, etc..

Lucky for me this time around, I pretty quickly I had reached the point where I no longer cared so much to answer the “Why me?” part. All the research I found and there still doesn’t seem to be any real solid answer to that question in anyone’s case. In all honesty, it doesn’t matter now.  It just is what it is, and the only one that really knows isn’t going to be telling me anytime soon.

But it’s easy to get caught up in the “Why me” phase, many people in many different situations spend a lot of time there, torturing themselves into darkness. 

For me though, it is the next logical question of “What now?” that seems to linger on and on and on.  My first answer was diet change… which was dramatically changed. It doesn’t take as long as you would think for things that were once so appealing to loose their come hither power. Once you get to the point where you don’t know if you can handle the temptation anymore, you are so close that it isn’t even funny.. seriously.  If you can find the will, then you are almost home free. It made me realize how many diets are lost, right before the point they would have been successful.  I kind of think of it as like when people go through those horrible symptoms of withdrawl when they are trying to come clean…  so close…

Now I will say that for me it was a little easier, as I noticed right off the bat that my more obvious symptoms seemed to quiet themselves tremendously when I avoided certian foods.. (not that they would go away totally mind you, but seriously was able to notice quite a difference pretty quickly, so that drove my inclination to keep up the diet changes).

The second answer, that.. well wasn’t my answer but was at the urging of my neurologist and family was the daily injections of Copaxone… which I hate.. but I guess it could be worse.

My own philosophy is that I the diet changes in the end will be what helps me the most.  The Copaxone, kind of acts like a decoy for all my renegade cells to attack, instead of focusing on my myelin sheaths. Many disagree, but it is my hope that in paying closer attention to my diet, I will encourage my body’s natural healing process to start working better… and maybe that my immune system will hopefully straiten itself out a bit.   Thats the my dream anyway ^^

All of that to get to this point where I really explain the title of this post…. /sigh.. sorry about that, I need to work on the rambling..

All the research, all the time disecting my diet, and getting myself to understand the signs of my body better.. you would think I’d have it figured out.  

With this disease, there are good days and bad days, plain and simple.

it seems that especially if I’ve just enjoyed a few of the better days, that there is this river of denial that springs up and I start feeling what I’ve come to call a state of “near-normal”  In this state, I start trying to make things be “normal” again.. like they used to be.  I try to add things back into my schedule, more appointments, accomplish more chores, just plain get more done.  Which… sadly this behaivor tends to end the “good day” cycle, and in turn initiates the “bad day” cycle.

When will I learn.. ><

Frustrations..

My sister has been having a hard time because they lost their insurance. She is due with her first child in January. Since June, I’ve tried to help her find some different options, and nothing has really come out of the search for options except for multiple denial’s & further frustrations. Tried and failed to get them on the Oregon Health Plan, and failed to find help from multiple other venues. 

We did finally find a doctor’s office that would even see her.  That was good .. I guess, except that the cost to them without insurance is over $800.00 for the remainder of her prenatal care itself. That figure DOESN’T include any of the hospital birthing costs, any ultrasounds, or other lab tests or blood work that they would run. 

So lets break this down.. $800.00 for the following:

  • a Month 6 check-up
  • a Month 7 check-up
  • (2) Month 8 check-ups (assuming it would then go every two weeks)
  • (5) Month 9 check-ups (assuming they would then be weekly)

This is a rough total of 8 Check-ups (so $100.00 an appointment then) where they will most likely in a time period ranging between 10 to 20 minutes they would: take quick blood pressure, measure her belly, listen for a heart beat, say “yep you’re still pregnant” and she’s out the door. In the last few weeks, I suppost they will check dialation..  but seriously $100.00 for that 20 minutes? (and thats probably being generous on the time allotment).    I would seriously like to see an itemized bill for why that 20 minutes should cost that amount.

 I know that in the “great scheme of things”, especially to those that deal with far more expensive treatment, this may seem like a minimal amount. But for an extremely new young couple that both make barely over minimum wage… this is all very overwhelming.  I really wish I could help them more.

The more I deal with the current state of health care in general, the more and more I feel it is all about money first and individual care last…  Its not even about doctors and patients anymore..  its all the “third party” beauracracy that has taken over. I can’t help but think that we’ve let insurance company influence & inflate actual costs for care, in addition to we’ve let really stupid, sue-happy individuals mess things up to the point that many doctors can’t even provide certain services any longer because of liability.

What a problem we’ve let take hold! Even sadder is that I know I probably don’t even realize the half of it.

My sister’s  mother-in-law had bought them a device that allows them to listen to the baby’s heartbeat when they want… My sarcastic side wonders if they could get a discount if they checked the heartbeat on their own before the appointment and just told them they could hear it? My sister-in-law is a nurse up in Portland.. I could have her teach me over the phone to take blood pressure and I could do that part before she went to her appointment… oh.. and where did I put that measuring tape I got in a sewing kit, we could measure her belly too….    …… ok I’ll stop.. I’m sure I’m probably being unfair..  Its just frustrating.

New Pic!

They said Saturday that they think we might have a roof being put on in the middle of October (a month away). Very exciting! Here is a picture after we brought the kids out later to look at the house’s progress.

Sept. 14, 2008
Sept. 14, 2008

I used to love to draw..

I had kind of forgotten till a few days ago that I used to really love to draw. I haven’t sat down and really drawn anything in the past 10 years..

Last night my youngest son asked me to draw Sly Cooper (its one of their video game characters)

It turned out cute I thought, so wanted to share. Hopefully you can see it, My scanner’s not working, so I took a picture with my camera.

Here was my what I was attempting to model it after…

So then I found that I had started something… lol

Kylan & Shelsea showing off their renditions of Sly Cooper… while Haiden was playing the game.. lol

The power of a simple term

****Warning.. some may view the following as potentially offensive***

So, After very much enjoyed a clip that a friend of ours mentioned in their blog I had an intriging thought come to mind.. At the end of the clip, they had people saying what they considered to be “Small Town Values” which spurred the following.

~~~~~~
So take a hypothetical walk with me if you will… Lets talk about a gentleman named .. Joe.

Joe has a dear friend named Nicholas. Nicholas has a debilitating disease that has robbed him of many of the things that he has previously taken for granted… Things that many of us takes for granted. Joe ended up giving up his home in order to stay with and help out his best friend.

Even with the struggles he faces, Nicholas has a true blessing in his best friend Joe, who time and time again proves to be the kind of friend that anyone would want. Even though Nicholas has family, there are distance and availability issues that prevent Nicholas’s family from being able to care for their loved one.

As the years pass by Joe continues to take care of his best friend, making sacrifices and seeing to it that Nicholas is taken care of. Helping him schedule trips to the doctor, as well as making sure Nicholas has food and medicines that he needs.

Things aren’t going well health-wise for Nicholas. Nicholas, with his wits still intact, makes a decision that though he has very little to his name, he would like to leave the few assets he has to the man who has proved to be his best friend and caretaker.

Now.. without going into the legality of all that thought.. let me ask you a question.

Would you as an individual want to deny Nicholas of his wish? What kind of reasoning would you have? Just curious..

~~~ story briefly interrupted~~

With my 10 year old looking over my shoulder as I write this.. she asks me what I’m doing. I tell her I’m writing a story.. I read her the story above and then I pose her the same question I just asked you..

‘Would you as an individual want to deny Nicholas of his wish? What kind of reasoning would you have?’

My daughter innocently replies “Of course not”
“But Joe isn’t really his family” I state, playing devil’s advocate.. (and at this point interested in what she is going to say now.. “Does that matter?”
“No” she says sweetly “because he’s like family, he takes care of him”
“Good Point” I say, and wink at her and send her off to bed…

hmm… from the mouth of babes.. 🙂

Would you want someone else to determine who you are able to entrust your worldly possessions to after you pass on? I’m not sure that anyone would… but I could be wrong..

ok now back to the story….
~~~~~~~~~~~~~~~~~~~~

Now unfortunately, things take a turn for the worse.. and Nicholas succumbs to the disease. Sadly it takes his life quickly, even before Nicholas gets the opportunity to completely finish out his will. Joe is devastated. Not because he didn’t “get” anything, but because his best friend of 12 years, the one he’s devoted a good chunk of his time and energy into caring for and laughing with is gone.

Do you think it kinda sad still that Nicholas’s wishes didn’t end up being upheld? Personally I think it kind of is. Living with someone that long, In some states – had one of them been of the female persuasion-, it may have even been viewed as a common-law marriage of sorts.. But that wasn’t the case here, just two best friends, caring and sharing time with each other. Still seems kind of sad doesn’t it?

I suppose one could argue that it wasn’t like they were a couple or anything…. but….um….what if they were?

Are you shocked? Does it change how you feel about the situation now? Had they been a gay couple, would it remove any sympathies you previously had for this hypothetical story of mine?

Ah.. the power of simple terms… “Gay”
“Small town Values”
“Patriotic”
“Conservative”

~~~~~~~~~~~~~~~~~~~~~~~~~~~
Ok.. explanation time.. at the end of the clip mentioned at the very top of this post, I noticed how often “Small Town Values” equated to a description that included “traditional marriages” in this bit. The show is comedy geared towards getting a laugh, but I thought it was kind of interesting.. got me to thinking a little…

Anyone in our country has the right to spend their life with whomever they want. Currently doesn’t mean they can always necessarily be legally “married”, but for the most part, individuals choose who they spend their time with. We are free to choose. But isn’t it slightly disturbing that despite this, the state still decides who is eligible for what ever “benefits” we may have, and has regulations on who they can be allotted to?

Health insurance for example.. really, if someone is willing to pay monthly for another person to be covered on their health plan why not let them? If I decided that I wanted to have a random friend – say from church, “covered” on my plan, and I was willing to pay all the fees associated (which is what I do for my husband and children anyway,). Why is it different? really?

I have friends that I consider to be part of my family, so why can’t I make the determination of who is an eligible part of my “family”? The worst case is that person would now have the same crappy insurance I do right? .. lol ^^ (just a joke.. kinda)

Some will say the reason is because they aren’t blood related to me…. but neither is my husband, and I can cover him. Neither is an adopted child, but I doubt people would argue there…

If you take sexuality preference out of the equation, does it make it more of an ample solution?

Just thinking…

Progress!!

Here is a picture I took today of the Habitat worksite. There is the beginnings of walls!!!

September 9th 2008
September 9th 2008

Other things are progressing for the good as well – Look at my little sister! 22 weeks along! Here is a shot of her practicing to be “Super Mom”…. oh if she only knew.. lol 🙂

Taboo Topic… Politics

The three conversations (at least growing up) I’d been conditioned to avoid at a dinner parties, and at any other public and private gatherings alike.. Religion, Politics & Sex. However, in the midst of a Presidential Election, all that preconditioning goes out the window, and these become the common hot topics. Media is partly to blame, but part of the reason is that that these three aspects have a direct bearing on how people react. A canidate’s core belief system is thought to be a mirror of what we can expect in the future. Their stance and integrity on that stance is why there is so much interest.

I am not, nor have ever been a “politically” focused person. In fact (maybe due to my preconditioning) I’ve tried to avoid it as much as possible. That being said, I turned 30 this year, and I have these three little munchkins that live with me that make me care about the world we will be leaving them in. I think my awareness has grown this past year, from originally being primarily focused on my family’s and friends bubble of space, to inadvertently finding that I may actually have an oppinion on some of the bigger issues at hand. Another reason maybe was that when I was younger, I just trusted that the government, while not perfect, I thought it was basically sound, so I didn’t need to pay much attention to what was going I guess. This I think was a very naive veiwpoint on my part.   

 But then.. I remember being in a hospital room having just given birth to my youngest son in March of 2003 when on the news they announced an official declaration of war in Iraq. I remember being dismayed that my precious little guy’s birthday would be shared with an official declaration of war. It was disheartening that while I was celebrating new life, our country was setting out to be involved in the direct opposite.  Don’t get me wrong, I know that war is unfortunately necessary at times, but I remember thinking even then that the I wasn’t sure I agreed with Bush’s focus or plan of action, course my thoughts on what should happen next was probably closer to the storyline of a James Bond movie than a war – Secret agents, covert missions to actually find Osama bin Ladin and such…  again naive probably.

My tendancy is to not talk about things that make me uncomfortable, or make others uncomfortable, or may cause problems. Especially ifI don’t feel I have a good basis of actual fact upon which to forge my own opinion. Politics definitely is one subject that I do feel I’m very inept at understanding. Partly because in my opinion, the whole”politics” thing just adds a whole other level of difficulty to things that should be common sense.  What happened to “Do unto others as you would have them do unto you?” To me – that statement covers the vast majority of all issues.  If people thought of others first.. and worried less about being affiliated with a certian clique or group we’d have far less problems!

That being said,  this election I’ve made an effort to be more informed about what both sides of the political parties have to say so that I can feel good about my single small vote. 

I had decided to give myself a few ground rules…

  1. To base the greatest portion of my newly formed opinion off of actual interviews with the candidates, rather than mud slinging sessions of mouthy media personalities.
  2. To totally disregard any forwarded e-mail on the subject, as most of these are the epitemy of word twisting and half-truths.
  3. To give myself permission to understand that these candidates are merely people, just like you and me, and are not going to be perfect.After all, we are electing a human, not a God. In my opinion, if God himself was asked to hold an office, he’d turn it down flat because there would be far too much bureaucracy and politics in the way of his main concern of helping people.

At this point, I find that I do now have the beginning of an opinion.

One of my biggest pet peeves are people who create drama, or are gossip mongers or mud slingers. I am also a “Plan loving” person, so I’m innately attracted to the side that has talked not only their stance on an issue, but have chosen to include some of their ideas on accomplishing that the goal. I would love to see an election where the sides, instead of berating the others running, all involved focused on conveying to the public their visions and plans for this country. One where past “Laurels” aren’t being sat on, but instead a focus on the future. Plus I like Optimism, and I’m not going to discredit a candidate because of the sometimes unfortunate name their parent chose for them…  Any guesses where my current affiliation is? hehe 🙂

I don’t have TV at home, so I’ve watched parts of the Republican & Democrat National Conventions on Youtube.com, as well as the Saddleback Forum with the Candidates, and a breakdown of a speech by Sarah Palin (who I will throw out there that I’m not as impressed with as some of my family friends insist I should be – and the view has nothing to do with her daughter either, and, since I’m here, I think it is a pretty remote chance that her youngest son is actually her oldest daughters first child.. Down Syndrom is far more common in women over the age of 35 ~she’s 44~, than those at age 16 or 17. Come on people focus on the issues not the drama!)  I’ve looked at some forums and discovered (what we already knew) that people can be extremely vile and can say some pretty incedible things and really believe it! 

Perception as always is such a big force as well. People in many cases hear what they want to hear. In truth, I’ve found instances where I listened and heard what I felt as a thoughtout responsible response to a question – others deemed it as soap boxing or inexperience. In other instances where I thought someone evaded the question with a “let me tell you a story” remark  or only offered short quick robotic “what the people want to hear” type answers, I go on to find comments posted appreciating that candidates “to the point” nature.   

It reminds me that an old cliche I hear frequently is true..  “Opinions are like <insert derogatory name for your rear here> …. Everyone’s got one!”  (sorry.. I try to stay family-friendly^^ )