Wednesday, February 28, 2007


My favorite of mom's pictures.
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Testing the picture options. I cant get them to work. And I am getting frustrated!!
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Testing, Why wont my pictures work, dammit!!!???
First off, thanks to everyone for their great suggestions. I am working out the details and such. But when it goes live I'll let y'all know.

Second, I really dont have anything to talk about, I am just bored at work, and I am the onl;ly one here, so I cant leave til Gary, or Diana get back, whoever is first. I kinda hope its Gary cuz then I can just leave. If its Diana she'll want to talk, or something that will tie me up and I wont escape. I dont know what it is, but I REALLY didnt want to go to work today. At all. Plus I have so much other stuff I want to do. Especially while the sun is out. It is suppose to get cloudy again tonight. Which is ok cuz maybe it will warm up a bit, but the sun will be gone again.

I got a really ahppy surprise. I am a MySpace-r. I love it cuz I can keep up with or catch up with people I never would have ordinarily. I'm not one of those crazy people who approves everyone just to up their friend numbers, I know everyone on my list. Either we are friends or we worked together, whatever. Anyway, the other day two of the girls I worked with at the Muscatine Wal-Mart found me on there. We had kinda lost touch after I moved, but I was SOOO excited that they found me. And through them I have been able to connect with a lot of other people I had worked with and lost touch with. So I have been catching up with them. It really makes me happy. So when I am home in June, we're gonna get together.

Oh, BTW, if you didnt know I will be home from June 25th to July 10th. Matthew is till up in the air as he has not yet gotten his plane tickets.

Friday, February 23, 2007

Here is what I have so far...

I was sixteen when I found out. Thanksgiving 1998. I was sitting in church with my family and I knew that something was wrong. I couldnt see. I remember leaning over to my mom and saying "Mom, I cant see." In our church in Iowa, where i'm from, there are three stained glass windows above the altar. The middle one is an image of Jesus on the cross, and even though I didnt know what was to come in the next few days, I remember that I have NEVER prayed so hard in my life, my eyes never left that image.
Over the next few days I was referred from my regular eye doctor to an optimologist, to a specialist, and finally to a neurologist. It was that one sentence that changed my life forever, "I think you have MS." So I did the MRI, the tests, the lumbar puncture, and my MRI showed something very scary, there were actually several lesions. Surprising amount considering I was only 16. This had been in me for years already.
My neurologist perscribed Betaseron, I had age on my side and my health outlook was good. The only downside was that I didnt know how to handle what I was just given. I knew nothing about MS. I was scared. And for a long time I was in denial. I felt fine. I looked fine. I FELT FINE!! My eyesight came back, and I had no other "Symptoms", or so I thought. I have invisible symptoms. The lack or balance, a slight gait, problems swallowing, remembering, finding the right word, and I am so tired all the time. Somedays it is difficult to even lift my arms. But all those things were so easy to explain away so I wouldint have to deal with it. I just wanted to go to prom, have a boyfriend, graduate, go to college. I thought I wouldnt be able to enjoy those things if I was "sick".
I'm 24 now. And I have had all those things, I just had them with MS. My husband is wonderful and comes to all my apppointments with me. I have come to terms with what I was unable to face all those years ago. I have grown up alot since then. And here is what I have learned. I will not crumble, I will not wilt, I may stumble and I may fall, but I will always pick myself back up. I will bloom wherever I am planted.
The hardest part for me was coming to terms with an invisible disease. I am very lucky in that I have not had any serious exacerbations since that Thanksgiving in 1998. So for awhile I went off my meds. I had switched from Betaseron to Copaxone. I was able to handle the side effects better.
Recently, I had another MRI done, my fourth. I had increased lesions. Heavily increased lesions. I had an effect but no cause. And that it hard, even now, for me to wrap my mind around. For there to be an effect, there has to be a cause, and I didnt FEEL bad. All that time I was walking around, thinking I was fine, my body had other ideas.
I have gone back on my meds, and I will stay on them. I work at the National MS Office here in Anchorage,Alaska. I feel like it is my way of taking control, fighting back. I will fight back. I will help others who are going through what I went through. I will help raise money for research into a cure. I will share my story so other people can read it and relate because they were a scared teenager once too. And somedays I will cry. I will cry because my tears dont compromise my strength.
I am 24. I had my d-day 8 years ago. And I have a full life ahead of me. MS isnt who I am. I am a wife, a sister, a daughter, an employee, a friend, an activist, and I have MS.

Thursday, February 22, 2007

My tears dont compromise my strength

I've been working on my story. I didnt realize how much I hadnt dealt with what has happened to me. I was young. I was scared. And so I pushed it down as far as I could and left it there. And now I am diggin all of that back up and its really hard. Really hard. My fear is that I wont be able to get through telling it. I know I will cry. And I dont mean to cry. I know it has been a lot of emotions, and I know it has been brewing there for 8 years, but I want to be able to tell it with convidence, and composure. But so much of what I feel, I know is residual from that day in Novemeber when I was only 16. But I ow I have so much more in the way of understanding then I did at that time. Now I thank God every morning I wake up and everything still works. That is a scary truth that I live with and have learned to accept. One morning I will wake up and someing isnt going to work. Not the way it should, if at all. Its not a threat, its a reality, but at the same time, I know that i am doing what I have to do to ensure that I dont have to have that morning.

But anyway, there is a site called facesofms.org, the link is under my link heading. I recommend if you have some time read some of the stories. Add your own. Whatever you do, spend some time there.

I have been readin these stories about people who are worse off than I am, I have age on my side. And a few about people who have the same or similar symptoms as me, but they are all older. Every story I have read, they had their d-day in their twenties or thirties which is typical. But I was 16. And I know that somewhere there is someone who needs to hear my story. Who needs to hear that someone else was young when they had their d-day. Someone needs to hear my story. So I am working on it. I will tell it. I will dig up those things I've worked so hard to bury. I will face those ghosts. And will cry. I will cry because my tears dont compromise my strength.

Tuesday, February 20, 2007

Daily dose of jamaica

Its nice to have a free day, but I am so bored now! LOL. My toe hurts so bad and it wasnt busy enough to make enough money to make the pain worth it. So I came home. If you think like mom, then to put your mind at ease, no its not infected. But it hurts like a mutha... I think I need to let it heal up for a day before I put it back inside the boot! So now I am just sitting here watching TV bored out of my mind. Matthew will be back from the UPS store soon, and here bugging me. So the quiet is ok for now. I guess I cant have it both ways, huh? I have decided that I want to go back to Jamaica. I know Matthew wants to go to DisneyWorld again, bt I really want to go back. I want to go and lay on the beach and drink fruity drinks with little umbrellas, with my feet in the sand. I want to lounge in the tide pools, and go to the waterfalls, and the Illuminated lagoon and I want to go with Matthew. I will find a good deal. I will. It will wait till we get to the Lower 48. It'll be less expensive that way. But the last time I went it was $800 or something per person. Not including excursion trips. I want to get off the plane, go down those stairs into the tropics. I want to watch the blue water as we come in for a landing. And as I look outside at the snow, and the 9 degree weather, and I want to go all the more. Ah, Jamaica, we will meet again.
I was really excited to learn that I could post pictures on here just by clicking the image button, so easy. But now I cant get the stupid thing to work anymore. Boo. I knew it was too easy that way. Boo.

Who wants to hear about me?

Diana has volunteered me to "tell my MS Story" for MS Awarness Week. We are having an MS experience tent thingy. The theme is the MS family, and focusing on how MS effects, not only the people who have it, but everyone around them. And creating the environment of family support among those effected by MS. So I have to have a story. I dont really know what to say. So if anyone wants to write me something I can edit, just to get me started, I am all for it.

Sunday, February 18, 2007

Blister

Yesterday I got a nasty blister at work. Actually, I think there were three blisters. Cuz there was two layers of broken skin and another blister. Needless to say, I didnt sleep too well last night. My body is so sore from work and then throw in the blister and the sore toe, it was a worthless night of sleep. But we will be getting some groceries thanks to the holiday weekend. and my broken back (and toe!). But things are looking up. Thanks to the parents, all of them, we are going to be a lot better off than we have been. At least on a better track to getting there! Oh, and I rock at my job, so Diana dosnt want to let me go, and they may be creating a position (part time, but paid) for me. We'll find out after the Walk. So here's hopin. If I have learned anything in the last week though, its to not get my hopes up.

Friday, February 16, 2007

T-Shirt Designs

This is the original tee shirt design. See where they put AK, and notice that Texas is bigger than AK. This WiLL NOT go over very well with my walkers.
This is the one I altered. Alaska is where it is supposed to be abd the size is more acceptable. I think it still gets the point across but isnt too outlandishly arrogent, remember this is for ALL of the US chapters, not just for the Alaska Chapter.

And this is Diana's version. Tis is the one that was sent to National for approval. I just think that it is to big, and self serving. I think it looks like we are trying to promote Alaska over the other states. I do like the position of the MS Walk loga better than where I had it, though.

My wierdest battle

I am now inolved n the strangest battle I've encountered in awhile. We have to choose a tee shirt design for the Walk. And National has decided that every one has to get the same design. In previous years you could choose betwen two designs. Well, the design that is in the lead right now is a map of the US with Hawaii kinda off the coast of New Mexico, which is close to correct. They put Alaska off the coast of Florida, and its tiny. I cant give this tee shirt to the walkers up here. They will have a fit. These are people who are VERY proud of the size of their state. If you cut AK in half we would still be the two largest states in the US. Imagine the ego of Texas and make is Akaska sized. They will never accept the idea that they are being miniaturized and put under Florida. Imagine if they shrunk Texas down to the size of Indiana. They would break off and form their own country. So now I have to convince some lady in yoming to either make AK bigger and above the map where we are supposed to be, or let us pick a different shirt design. Otherwise, they are going to end up pissing off a lot of my walkers. It is a wierd batle to fight but I guess someone has to do it!

Thursday, February 15, 2007

Disappointment

Matthew's package was denied. we aren't coming home.

Ice cream headache

Thats how I feel all the time. So overwhelmed it is an ice cream headache all the time. 4 jobs. No money. Over our heads. Ever sinking lower. Ice cream headache all the time. The worst... how did we get here? Where did it go wrong? Oh, yeah. I remember. When everything else went wrong. It spiralled out of control with everything else. It was me. I got us here. My decisions. My choices. My mistakes. I got us here. I have tried to get us out, cuz I always knew that I got us here, so I should get us out, but I only got us deeper. How did we get here? I know very well how we got here. and I didnt stop it, I didnt control it, I let it happen. So here we are. Barely breathing, but still alive. I suppose thats something. Even if that something isnt all that great.

Wednesday, February 14, 2007

Ah, Valentine's Day.

What a complete waste of a day. Why call it a holiday? Holidays mean that I get a day off. Or something happens. Nothing happens today, unless you have money. If you have money then you get presents, or go out for a date or get a card. I dont have money. We dont have money, so nothing happens. Not that I really care cuz I think it is a stupid non-holiday. Its a day to boost card, chocolate and flower sales for those who have a quote- unquote valentine. And a day to make those who dont have a "valentine" feel bad cuz they dont have a valentine. What a horrible day. Lets flaunt our happiness in the faces of you who have no one to be a valentine and in the faces of you who DO have a valentine, but are too poor to celebrate it in the way that is dictated by the Valentine's Day Nazis. And you know what PROVES this is a terrible, violence causing "holiday"? There is no President's Day Massacre. No Flag Day Massacre. No Arbour Day Massacre. Nope, just a St. Valentine's Day Massacre. What does that tell you? Celebrating the planting of trees on another "Hardly a Holiday" does not cause people to go crazy and kill a bunch of people. (yes, I know that the DAY didnt cause them to kill people, the fact that they are GANGSTERS did, but I dont care, still a massacre on this non-holiday) Boo on today. Boo on this non holiday and boo on all you cupid loving, red and pink sporting, card giving, chocolate eating, rose smelling Valentine Nazis.

I hate Valentine's Day.

Thursday, February 08, 2007

Moving Update

Ok, so Matthew checked on the "package", and his supervisor has approved it and is sending it up the ladder so tomorrow it should get is second approval. And then it goes up and then the closer to the top it goes, the less people are going to look at it and just sign it cuz everyone else has already signed it and everything has been looked over and so on. So still not getting my hopes up, but.... No that's just a blatent lie, my hopes are up. I will be devistated if this doesnt go through. I need to go talk to my new "friend" and request a transfer and see what is involed in doing that. This is going to be fun... It is also going to cost about $185 to take the cats home on the plane, and that doesnt include health certificates, tranquilizers or new kennels, Jackie has grown out of hers. And what else? Oh, we decided to hire a Base Housing Approved cleaner to come and clean the house. My boss, Diana, suggested that would be the best thing. (her husband retired from the Air Force) She said when you do it on your own, you'll never pass inspections on the first time. But if you hire a BASE APPROVED cleaner you will almost ALWAYS pass the first time, cuz they know what needs to be done. Cuz some things HAVE to be immacculate and some things you dont have to worry about. So we think its the best idea. And I have found a flight that should be minimum travel time for the kitties. About 11 hours total, with layovers, so I think that they will be ok.

I'm really nervous about having to take both of them myself, but I'm sure it will be ok, people do it with their dogs all the time! I can do this. It is not as bad as I think it is. Its not. I've lived through a lot worse, right? Right. No biggie. No stress, I have people to help. No stress. Its all good. I am making lists. I have a "Send Home in Matt's Truck" list, "Emily's Packing List" sub-divided into catagories 'Shoes', 'Clothes' 'Bathroom', and 'Odds n Ends', "To-do" lists complete with deadlines. I am organized. I just need to know whn I can start executing my lists!

Stay Tuned.

Archives

I have just realized that my archive headings are all screwed up. 2003 should be 2004 and December 2006 is actually January 2007 and January 2006 is actually Feb 2007. And I dont know how to fix this. It seems wierd that it is doing that. Not that it is a big deal I just happened to notice it today. Wierd.

Monday, February 05, 2007

The novelty has worn off the idea of going home and reality is started to set in to what lays (lies, w/e) ahead of me. There is so damn much to do and I want to get started so I dont feel so overwhelmed, but I cant cuz I dont even know if his request is going to be approved. So if it isnt, then i ould have done all of it for nothing, but if it is, then I will WAY behind where I want to be. I think maybe I will get a couple rolls of bubble wrap and start wrapping my little knick knacks so that much more will be dont and I will feel like I am doing something. And I am making lists, TMO lists, Mail lists, my packing lists, and lists of what I am sending home in Matt's truck. So again I feel like I am doing something. Cuz I HAVE to write everything down or I WILL forget. This is just crazy, but always an advocate for following the signs presented to me, everything is falling into place as we go along, so I cant even imagine this being the wrong decision. I just cant wait till the papers come back. I know everyone is like me, trying not to get their hopes up, juct in case it doesnt happen, but when I tell people I might be coming home, they are just like "ok". I just have to remember they arent getting their hopes up, cuz if I forget that, then I would get really depressed cuz no one seems to be all that excited. But the time will come. It better, people!

Ok, I need to get out and distribute some brochures. Oh, maybe I will do that tomorrow and instead, I'll go up and take a nap. I think I slept a total of an hour last night, I kept waking up cuz Matthew switched to mids so he went to work at midnight, so I kept waking up. I am SOOO tired!

Saturday, February 03, 2007

Welp, Matthew is turning in the papers on Monday. We're one step closer to coming home. There is hope. Whether we address this now or in a year, we'll have to face most of these issues, so lets do it now. Especially after what happened on Thursday. I am happy to get out of here. We have been here long enough. So here we go. Soon we will find out how fast this roller coaster is going to take off. I just hope I can hang on.

Thursday, February 01, 2007

She TRUELY is a psycho

Ok, so up the creepy factor of my life and a MAJOR Pro in the whether or not we should move. I was out taking pictures today since it was a beautiful sunny, clear day (Igot some BEAUTIFUL shots by the way). So I was down by the port cuz there was a good view of Denali, and I wanted to go to Earthquake Park to get some good shots but I couldnt remember how to get there from the little random street I was on so I was making some wierd turns and stuff. I looked in my rearview mirror and there was a white SUV behind me. My heart skips whenever there is a white SUV behind me. She drives a white Escalade. What if its her? I looked up and it WAS her. She was RIGHT on my butt.And it wasnt just by chance. It wasnt like she HAPPENED to turn in behind me and I was just turning on common streets and it was all coincedence. It wasnt, she was FOLLOWING me. And she looked like she was writing something down. I was shaking so hard. That stupid bitch. She was FOLLOWING me. I wasnt doing anything but driving. I called Steve and told him it happened. And I called uliet, even though she's not my "special friend" anymore. I didnt have the phone number to my new one, so I called her and told her so if She tries anything, I have already told them. I dont know what I would do if the cops showed up at my house and tried to arrest me again for some crazy story she told them about me. God knows what she is capable of. Please pray that she wont do anything.

You have no idea how scared I am. I would like to think that I am above this, but she got to me. She got to me. She has the control. I have nothing. I dont know what to do. I dont know what to do. I am so close to having this be over. It has been over 6 months. Why? Why did this happen? Am I back to this? Am I back to feeling powerless, and vulnerable, and weak, and terrified? I am NOT any of those things and she is the only person in this world who can make me feel that way and I HATE that. I hate that she still has that much power over me. I hate that. I dont want her in my life. I dont want to look in my rearview mirror, with fear in my heart that she will be there. I dont want to worry that whenever I go somewhere, that she may be there by chance. I hate feeling this way. But I still can not bring myself to say that I hate her. I have EVERY reason in the world to hate her. And now I know that she still is after me. For whatever reason it is, she is still after me. And I know that she has put one of my friends in a very questionable position at the store, cuz she called me to ask my advice. And that pisses me off too. They are telling her to just do this, and not ask questions and not tell anyone. And I am sick at how familiar that sounds. And I told her at the beginning that if she stayed, to just be aware of what was going on and the second she felt uncomfortable about something she was told to do, to leave, quit, get out. And I repeated that last night. I truely believe it.

I hate all of this. If it wasnt so much stress I would say let's get out of here. but who knows now.
I am just not ready for this. I cant make pressured decisions. I thought i had a lot more time to prepare for moving back. Now I may be back in June?!?! What am I supposed to do? You cant just tell me this and expect me to understand what is happening. I have just gotten back on my fet here, and I have been bowled over again. How does this work? I dont even know? How am i going to get my medications? Do I have to start all over? I guess that solves the problem of me not knowing what I am doing. Oh, wait I have to go home and figure out what I am going to do. i have to find a job. I have to transfer all my baggage down there too. And I dont mean suitcases. It's like $80 per extra suitcase. Cuz I can damn garuantee that I will need more than 2 suitcases if I am moving home in June and then I will have the cats too?!?! You have GOT to be kidding me! I going to need at least three suitcase if not four, AND the cats. Jackie will have to go under the plane, and I dont like that. I could carry grizzly on, she'll still be plenty small enough, but is that too much trauma for her, she is still so young, I dont want to screw her up! So we will have to get certficates for both of them, and it costs $80 per animal.

And where are we going to live? I have to find some place to live before I can get a job. So where are we going to live? I guess I'll have to move in with mom and dad for awhile. Maybe we can rent the house Matt and Cassie lived in! HA! Across the street from my mom and dad. Thats a thought. Amanda wont have to worry about taking care of them anymore. J/K, you still will. HAHAH. I think I am losing my mind. I cant even wrap my head around this! I was prepeared to leave in '09, not in 5 months.

Matt pretty much has a second job lined up so we can get things paid off and money saved up for a cushion. It wont be a very big cushion, but we can just go across the street and eat mom and dad's food if we cant afford our own. LOL. Plus they have slow internet. Are we gonna have to have slow internet too? And what about cable? Will we have to get a satellite dish? What am I talking about? I dont even know where we are going. Except I know we might be going soon.