What is the classification?

I had this thought when reading a friends post.

When it comes to political things, I always cringe. To start off with, there is a simple, most basic question that I can never really answer.

What party are you with? What is your political classification?

In honesty, I truly don’t know. I place a high value on sincerity, and positive motivation. With all the media spins/drama creation and the fact that as far as I can tell, there is a good chunk of the politicians on all sides I honestly would NOT want to align myself with, it gets pretty hard. So how do you answer a question like that?…. and why should I have to?

What is the political classification for a person who would just like to see balance? If you think personal responsibility should be upheld, but don’t think the “Every man for himself” attitude is acceptable, or what was intended by God, or our founding fathers even. What if you think that its OK to help your neighbor, and that you believe its a plain fact that we should.

What if you think that the reason we have the issues we do, is the common misguided mindset that value has to be measured in dollars and cents, instead of quality and time. What if you kind of feel that money in truth is a false value, and serves more as an excuse for people to use/abuse each other and behave badly, than a reward for working hard, because virtue doesn’t seem to make anyone rich.

Money is just a pretend value that we assign. Because we as humans, believe that we have the right to “own” something just because it is there, and also because as far as your eyes can see, everything in possible view is already “owned” by someone or some group, it leaves little room for true creativity and progress to grow, and offers no real way to get along in our society without it. Because everyone buys into the idea of money, there is no longer a way for someone to be able to provide for even their own basic needs without having it, so we become its slave and spend our lives with it as a focus. As a society, too often the road taken when coming upon difficulties is to throw money at it, instead of gathering together and doing something real an meaningful – correcting behavior, or simply working together. If you don’t have the money in the first place, you can rarely be represented effectively.

What have we created by thinking this way?

What classification does it make you if you believe that things will continue to degenerate until people embrace the best part of their humanity. Their ability to look beyond themselves, and actually care. The ability to discern a difference between true and false measures of value, and the ability to choose to make a difference.

Funny Phone Trees Stories

Funny little anecdote…

In general, I’m pretty mild mannered, however today found me a bit frazzled and it ended up giving me little funny story to share.

No real names will be used in order to protect the not-so-innocent….. 😛

At my place of employment, I spend a good chunk of time on the phone to a certain vendor who will go unnamed. This particular vendor, has one of the most horrid phone trees that I’ve ever had the displeasure of using, and unfortunately I do have to use it more often than I’d like. Basically there is a whole lot of voice recognition commands (that hardly works – who knew that Oregon and Nevada sounded so similar… >< ) mixed with things like, "press 1 for yes", then and punching in number strings and specific codes, then multiple questions narrowing down why you are calling. If you mess up at any point, or hesitate a second two long, the system will tell you that you will need to call back later with the correct information, and then it will hang up on you.
For a few years now, I've tried to outsmart the system by dialing "0", "#", and "*" trying to escape the tree and get to a regular person. At the very beginning it only mentions that you can say "help", but when I've done that, it only serves to route me back to the very beginning main menu.

Today for whatever reason, about three quarters of the way into the system, it tells me that it cannot find the information I am looking for me, and starts to go into the spiel about not being able to route my call, and suggesting I call back when I have the correct information.

In my frustration, I say out loud "Come on! Just give me a stupid agent!….

to which the system responds saying "AGENT".. and puts me on hold….

Holy Cow! Not once does it ever say that saying "Agent" is an option, I called back again again to check.. LOL!

Not very often has loosing my temper been very beneficial.. lol!

You can bet that the very next time I have to call them, I will be saying "Agent" until I figure out at what point in the tree that becomes available, and will do it that way from here on out!!!

Love and MS – a slightly bizarro Valentine-esque post..

Real quick, I’m not sure if I mentioned it here, but next month I’m scheduled to see a new neurologist. I hope it goes well. I really hope that this one is up for having a little bit more discussion than just telling me to take drugs and cross my fingers.

MS can be kind of a lonely disease. Because it is so individual, not even affecting other fellow MS’ers the same way, it proves to be challenging to communicate what is going on both emotionally and physically. It makes us question ourselves, and our sanity. It can be an isolating factor in wading through treatment options even. What works for the goose, doesn’t necessarily work for the gander, and it gets tiresome trying to second guess what will work for you long-term and what won’t. It can be overwhelming at times.

I’ve been able to maintain pretty well I think, as long as I play by the rules. I’ve had a few really bad days too, which is just par for the course. It is really hard sometimes though. Its as true of a balancing act as you can find I think. Personally to maintain my spirit, (which is so important – regardless of what you are told, attitude and perception can make or break you) I still need energy and inspiration in my life to facilitate some kind of creative expression. I need it for my well being, and for my sanity… everyone does.. MS or no.

Mind you, that finding forms of inspiration and creative expression even for the “normal” can be somewhat of a task. But when things aren’t normal, its just as – if not more – important. Finding chances of creative expression doesn’t erase my health issues. It won’t serve well as a long-term band aid to cover up the problems, but it does improve my being and is needed just the same. It is needed to gain energy. Creative expression is at the core a way for me to feel alive, and I need it to maintain, to keep going. I need the energy to be able to give energy back, because that is what fuels me. We were never meant to be stagnant beings. We need to grow, change, learn, give and take fluidly, despite our tendencies to work towards finding an auto-pilot-able routine.

But its hard.. Its no wonder why people give up, and go into denial about the whole thing for different periods of time. It can take so much out of you to keep up. In addition, it takes some real grace on the part of those around us to be willing and able to handle the ride that MS takes us on. I’m very lucky to have the husband that I do. As crazy different as we are, he seems to understand that. I hope he will continue in the future.. 🙂

Unfortunately I’ve read, heard, learned so much lately about how often MS leads to divorce. I think it can be an incredibly bumpy ride for many, stressing and stretching even the healthiest and loving of relationships. There are the obvious issues for the individual with the health problem. Stirred in with our own normal – unrelated personal baggage and idiosyncrasies, now additional we have further fear, guilt, pain, a sense of blame, or inadequacy borne from whatever the health issue in question is. In this post I relate it to MS’ers, but really it can describe multiple diseases and health issues. The one who is “unwell” is now in need of a totally different balance in the kind of support they need.This can throw our loved ones for a real loop. This can sometimes no longer be what our loved ones imagined they “signed up for”.

The MS’er’s needs have changed, but in knowing that a good relationship cannot be one-sided, its so important that at the same time – we prove able to step back and see things from our loved ones perspective too. We will often figure that since they are able to escape the disease.. that it doesn’t affect them as much, but this is incorrect. MS is like a water droplet in a lake. It not only affects the initial contact point (the individual), but it has waves that radiate outward that cause change to those around us as well. The closer they are, the more they will be changed by the ripple.

The MS’er still needs to feel needed in a relationship, we still need to feel viable, we still need to be encouraged, but now we have some actual limitations to complicate matters. Our “spoons” available are less in quantity, and we still have to accomplish the same but now with less. In some cases goals have to be adjusted, which can be a painful realization in itself.

Its how all parties involved react to these limitations and changes that determine our path from there.

It is possible for our loved ones, to feel just as hopeless if not more hopeless than we do. They are unable to really do anything that really “fixes” anything for us. They can help, but they cannot fix, and that is pretty hard for some ego’s to handle. We aren’t all good at balancing, and often extreme reactions occur in both ourselves and our loved ones.

An example of an extreme reaction could be where they just go about business as usual, thinking that if they ignore the limitations, that it will work itself out, or force the situation to not be true. This may incite the person with the health issue to either become indignant, questioning how much their loved one actually cares…. or to follow suit and ignore their own problem until it becomes so unavoidable that “faking it” is no longer plausible.

On the inverse, a loved one may react to the news by babying the MS’er. While this may be nice at first, it isn’t a realistic set-up for a relationship. For the one with the health problem, they may begin to feel worthless, they may feel more like a burden, may begin to feel almost trapped by their loved one no matter how sweetly they are treated. It may actually work the opposite as intended, and sap energy and life from the MS’er. Just because we have limitations, doesn’t mean we can’t still do things. If you take it all away from us, we will wither. For the loved one who is using this tactic to cope, it will eventually lead to small pangs of resentment, at now having “extra duties” which if allowed to grow, can cause definite problems.

Its an extremely hard balance for all involved to strike. There is no auto-pilot regime that is able to easily get through all that MS (or any other sickness) has in store for us and our loved ones. Just like everything in this life, it is constant work, and it doesn’t let up… and just like everything else, its how we react that guides our life more than the issues we are given to deal with.

A note from Debbie…

Below is a comment I received from Debbie, a fellow MS’er. I have moved it off my “about” page to here so that you all can read it, because I think that it is important what she’s trying to do. Sometimes awareness even needs to be refreshed in those who are actively living with the situation. Not only those who don’t know anything about it. I will be adding her link to my “MS Bloggers” link list as well…

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Hi,

My name is Debbie and I have been diagnosed with MS for approx. 10 years now and in the last 2 years MS has really started to have an impact on my life. This year I decided not only to start a team for the MS Walk but also to start a blog which will chronicle my life with MS from the beginning till I catch up to today. Though as things happen in everyday life I will interrupt the story of the past with a look into the present and updates on my team for the MS Walk. My blog is called MS and Me : My Story . I would really appreciate it if you would place my blog on your blog roll and I will do the same for you. I figure the only way to break into the MS blogosphere is to start connecting with and through other bloggers. I am also going to paste the letter I sent out to family and friends to start fund raising, right below this, and hopefully that will give you an idea of where my blog will be headed for a little while. Thank you for your consideration.

Debbie

Dear Family & Friends,

Last year I walked in an MS walk for the first time and SHAME on me. Shame on me because I was diagnosed with MS approximately ten years ago now and this was the first time I ever done anything active about it. I would give a little bit of money through the United Way but I never did anything else. I often thought about doing something but there was always a reason not to. Something else was going on; it was too much effort to put together a team; I didn’t want to bother my friends; I hate fund raising; I forgot; and any one of a long list of other mundane excuses. The biggest reason, however, was that, inside, I was really scared.

When I was diagnosed, I was told by the neurologist that the type of MS I had at that time was relapsing remitting. That meant that I would have attacks, but I would recover fully between each attack. Since I had only shown sensory symptoms so far, and no motor involvement, I would likely continue this way. And for a long while I did. I had periods of numbness here or there, maybe some altered temperature sensation, but nothing that I considered more than a mere nuisance. I continued to work at my job as a paramedic without my coworkers being any the wiser. The worst thing that MS did to me until that point was almost keep me from adopting my
beautiful daughter, Ksenia, because of a Russian law which stated that people with certain types of MS were not allowed to adopt from their country. Luckily, it turned out that I hadn’t been diagnosed with one of those forms.

After this brief scare that MS might actually have a real effect on me, I just went on with my life as normal. Deep inside, though, I always knew that there was a chance that it could all change in a minute and I just didn’t want to think about it. Hence, my previous lack of involvement with anything related to raising money or awareness for MS. If I became involved I would have to interact with people who hadn’t been as lucky as I had and watch them deal with MS-related challenges and disabilities that I pushed from consciousness and always hoped to avoid. I was afraid that it would be like seeing into my future and, as I said earlier, I was scared.

Well, in the Spring of 2008, everything changed. I finished a shift at work, planning to return to duty in a week and a half. Little did I know that would be the last time I’d ever ride a paramedic unit.

I was off for a week’s vacation in Ocean City with my husband, Ed, and our two kids, Ksenia and Gabriel. The second day, I felt like I had to pull myself up the stairs in the condo. I could tell that I was having trouble walking, though it took others a little longer to notice. My right leg became so weak and slow to respond that I no longer trusted myself to drive. It finally got to the point that we went to the local emergency room.

That evening was the beginning of the hardest period of my life to date. Of course it was assumed that the MS was causing the symptoms and with proper treatment they would go away as they had in the past. That night, however, we also found out that I was pregnant with our precious little girl, Eliza. So now instead of receiving the typical treatment, I was told that I could not be treated at all because of the pregnancy. I deteriorated quickly.

I went from having difficulty holding my nine-month-old, to the inability to feed him due lack of arm strength and endurance. I went from having trouble walking, to basically being an invalid, stuck on the couch, if there was no one there to help me. I needed someone to help pull me up off the couch and I didn’t even have the strength in my legs to lift my feet over the dividers on the floors between rooms. The only extremity I still had a fair amount of use of was my left arm. My mom drove a two-hour roundtrip every weekday for many months to take care of my son for me while I laid on the couch and couldn’t even hold him because I was afraid that my arm would give out at any time. One thing that still breaks my heart about that period is that I was unable to assist my daughter, Ksenia, is the search for her high school graduation dress.

I was lucky that early in my pregnancy I met with a specialist who convinced my neurologist that I could be treated. After two rounds of treatment and one hospital stay I began to slowly improve with multiple setbacks along the way. Eventually, we had a happy, healthy, baby girl, and I regained about 90% of my functionality. However, without 100% recovery, I could no longer perform my job as a paramedic. So, after fifteen years, at a job I loved, I was forced to retire on medical disability.

This is a road that is far from ending. While in California this summer, I relapsed. Though thankfully not nearly as severely as the earlier attack. As I sit here and write this and watch my son twirl in circles, I still consider myself one of the lucky ones. Now, however, I know that as one of the lucky ones I must do something to help with the fight to cure MS. My hope is to help secure a happy and positive future for myself, my family, and all of the others affected by this horrible disease. My little ones need their mother and I would love to continue to be an active participant in my children’s lives.

Many strides have been made in MS research lately, including the release of a new drug for the treatment of leg weakness and many other hopeful experimental therapies not yet available to the general public. Without support and money from people like you and me, none of this would be possible. Because of our support the future holds much more hope for me, my family, and many other families like us.

I have started a team called Next Steps to walk in the Columbia 2010 5k MS Walk. I am asking, hoping, and praying that you can find some way to become involved. You can join our team as a walker and sponsor, as just a walker, as just a sponsor, or as a volunteer at the event. Please go Next Steps’ site at Walk MS:2010 or to my personal page to sign up to do whatever you can to help. Additionally if you have any friends, co-workers, fellow church members, corporate leaders, etc. who you think might like to join or support us, please pass this on to them. We can use all the help we can get!!!

I would like to thank you ahead of time for any help you are able to give. Anyone who is available after the walk is invited to our house for a celebration of the impact we have made!

To be understood…

Its interesting to me sometimes that even as opposite as things are, when you look deeper many things go back to the same simple principle.  Take spirituality and technology. I think we can agree that those two often sit on direct opposite ends of the table.  Yet even as different as they are, there is still this tendency to work towards a similar kind of existence. Not necessarily willing to agree in many avenues, but in the end the desire is remarkably the same.  There is a wish to be understood themselves.

There are many different versions of “spirituality”, but at the base of all of them is a desire to extend beyond themselves to touch and teach those around them. To be part of something bigger than the individual. To make their ideals understood by others and hopefully to inspire more to be like-minded, creating a support network.

Technology is forward thinking, and continually working to make things more convenient and more accessible. Networking to give you as much information as possible at the touch of a button.  Removing past limitations and exploring new ways to share and be known.  The popularity of the Internet is a testament to this ideal. Allowing collective resources to be shared by those who choose to tap into them. Constantly branching out and encouraging development, and growth.

Why is this? Its because it is human nature. We are social beings, and it invades all aspects of our lives. If we would just come to terms with the fact that we need each other, we would be better equipped and make better decisions for ourselves and others. If we made decisions based on the 7th generation impact, like was the practice of many of our Native Americans, then things could be so different. To put far more care in to the benefit of the whole.  Many don’t seem to understand that when you do things for the better of the whole rather than the better of the individual, it makes far more of an impact, and it in turn creates conditions that end up also being better for the individual as well. It just may take slightly more work to get there, but our base is stronger when we are collectively stronger. It is far less important to have to agree on every aspect, as it is to just simply be respectful of each other.  To find any sort of peace, respect of each other has to be first and foremost in our own actions.

It is a misconception by many to believe that forcing others to agree to their ideals makes a stronger base. In our society control is viewed as the ideal. In reality strength comes from diversity, creativity, and experience, but its harder to govern or rule over people who are so different.  “Cookie cutter” mentality is encouraged. This is the whole reason for our political parties, to encourage people to choose a label for themselves, and then encourage a “home-team”  kind of  hype that blankets a whole lot of issues that in earnest the individual may or may not even agree with, but because its encompassed in the whole “ideal” that is being sold, it gets snuck  in there.  It fosters a sense of “belonging” to a group who has the “same” viewpoints, when really that may not even be the case. But we are very adamant to support “our team” in this “game”.  Seriously the only real benefit a political party offers that I can see, is for politicians who are crunching numbers and trying to come up with strategies to win an election. Beyond that it only seems to hinder progress, as people become petty and put undue importance on the strength of a “party” rather then the betterment of the whole. Its not the party that matters…  its our people…. its all people.

Consider that it is impossible to actually solve a puzzle, when there is no big picture, and all your pieces are the same shape. We need the diversity in each other. We NEED to care about each other, just as we need others to care about us. Open-minded respect is the only way that happens.

We have so much potential, but until respect becomes mainstream, we will continue flail.  We all desire to be understood, but we also need to desire to be open to understand as well.

(on a lighter note.. were you aware that snuck isn’t really a word? Its more proper to say “sneaked”… but it sounds wrong in the way I was using the word.. I’m leaving it as snuck…  so I apologize for those who notice)

Smiles interrupted..

About 3 years ago now, My husband and another friend had kind of dragged me nearly kicking and screaming into playing this online game. It was silly and fun, and for my general no nonsense nature, what I deemed originally to be a waste of time. I couldn’t possibly imagine anything worthwhile coming out of it, because it was just a game. Commonly rolling my eyes at the prospect in the beginning, because I was far to sensible to play their goofy little games, but conceding because Deon really wanted me to play with them, so I did.

The funny thing is as adamant as I was in the beginning, I actually started to enjoy it because of the social nature, and because of the people I met through it.  Even though we haven’t played now for quite awhile, I still have contact with a few really wonderful people I had met there.  I have a friend in England, one in Scotland, and a handful speckled all around the US that I either e-mail, or interact on facebook with, or call.

One such friend was a gentleman out of Washington by the name of Chad Van Skoyk. He was always incredibly nice. Deon and him hit it off pretty quickly as their humor was very similar. I remember times with tears in my eyes from laughing so hard while reading over their chat sessions.  Chad was always very bubbly, friendly and really just had a positive attitude. Things could really be going awful for him, and he still had the ability to crack a joke, or just talk out things and end the conversation on a positive note.  Incredibly sweet individual who even after we all three quit playing for lack of time among other things, still would send us texts on our phones a couple times a month with simple messages like: “Smile friend!” and “*hugs you*”. Would chat with him on facebook occasionally, and send e-mails. Spoke to him every once in a while on the phone, and the kids even would talk to him. His common saying was “Its all good”, and that was one that Deon began to borrow in dealing with the early part of my MS diagnosis. “Whatever comes.. like Chad says.. ‘Its all good’, we’ll deal with it together”

A few months back we hadn’t heard anything from him in awhile. We knew he had some major health problems we were getting worried. Then one day out of the blue we got a message from him letting us know that he had been in the hospital, and that he was being transferred to yet another hospital. We tried to check on him as best we could, but communications understandably slowed down once he entered the second hospital. Christmas was our last text from him, wishing us a “Merry Christmas, I miss you guys, have a happy and safe one!” which we quickly replied with similar sentiments.

We had tried to contact him a couple times in the last month, but had not gotten any kind of response. Many of our last communications with him, he was always still pretty positive, but was commonly exhausted. Just tired.

This morning, we  again had tears in our eyes for a much different reason.  I was very sad to learn that Chad had passed away on the 5th due to complications of Congestive Heart Failure, diabetes, and kidney failure.  Ironic to me how someone who had one of the biggest hearts of anyone I ever knew would have “heart failure”.  Shows how separate our souls are from these bodies we inhabit.  My prayers go out to his family who have suffered an incredible loss, and to the rest of us who will be missing him as well.  Chad thank you for being our friend. We will miss you!

I will forever be glad I conceeded, and found the time to “play” with you and Deon, and the other truly wonderful people I met during that time. Sad to think had I “gotten my way”, I may have never of met you in the first place. Thankful that God doesn’t always let us “get our way”, but especially grateful that you are no longer suffering, and that you are with him now.

Till we meet again friend!

Happy Birthday Honey!

My very first post on this blog was exactly two years ago today. It was the smallest post I’ve ever written, and I’m going to repeat it’s sentiments today.

Happy Birthday to my sweet Husband!

That line was its entirety.

So much major change has occurred over that two year span. It was shortly after starting this blog, that I found that I had MS. We were struggling to help our son with his psoriasis. Major diet changes were put in place. We were accepted by Habitat, built our house and moved in.  We gained a new niece, as well as a new grand-nephew.  Experienced some drama here and there…

but…

Even with all that change, one thing has stayed the same. I am married to a very sweet man who through it all has stood by me, even when it has been difficult. Could have easily decided things were too hard and left, but he hasn’t and as opposite as we are in so many things, our goals are the same.

He may not even read this because he’s not the computer geek that I am… lol.

Love you Deon!

Thank you for our sweet family!