This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
 
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I'm Back! An Update On Me & My Plans

Sorry it has taken me a few days to post anything. As you are all aware I went to Seattle to see my neurologist and while I was there I attended the Girls Night Out event hosted by the NMSS. It was great! (I will do a separate post regarding this event). We did our best to try and make it a fun trip even though it was short. We (meaning Justin, Katie, and I) drove to Seattle Thursday where I had my appointment with Dr. Jung. I am relieved to finally be feeling better. It is so nice to be able to go to the doctor and not feel like everything is well, now this is wrong, or that is wrong. Finally I got to say "I am starting to feel a bit better". Dr. Jung seemed to be very pleased with how I am doing too! It has taken a while, but it seems that I am finally coming out of this flare. It is about time! ;) Anyway, no real big changes. My Aricept has been increased and of course, I must continue on with the Avonex (which although I don't enjoy, I will do). I can take even more Ibuprophen for the pain, which will help since I am still having significant pain with the injection (and for a couple of days after). She also gave me some great resources to check into regarding help with my recent insurance issues (there are resources through NMSS & NORD). I will let you know more when I get more information from these sources! She felt that I was doing all the right things (joining a gym to start swimming, dealing with diet, etc.) and assuming that everything goes good (PMA: it WILL!) then I don't have to go back for 3 months.
Friday we headed home. It was such a beautiful day, beautiful drive! Of course we had to stop in North Bend at the outlet mall. Every time I go to Seattle my mom has me stop and get her stuff from the Eddie Bauer Outlet Store. She loves that place (probably owns some stock in it by now, lol)! North Bend (for those of you who are movie buffs) is where they filmed a good part of the movie The Vanishing with Kiefer Sutherland, Sandra Bullock, and Jeff Bridges. There have been other movies filmed here too, but this is the most recognizable (due to the kidnapping scene at the gas station located just below Mt. Si, in the picture above - the gas station is across the street). And, as nice as it would have been nice to stay in the Seattle area over the weekend we needed to get back. I needed to take my Avonex injection and my parents watched Nathan while I was in Seattle (Nate had school). My parents are in the middle of purchasing a home and my dad has been busy trying to get everything finalized for that.

The drive was peaceful. I am not sure about all of you, but for me there is just something wonderful about getting in a car, being on the open road and driving for miles in such a beautiful setting. Granted, there are times where this does not do a lot of good for my legs and my back, but I just love it. I especially love driving through the mountains. As much as I have NO desire to live where there is snow, I do miss the mountains. This picture is not a good representation of how great the cascades are (as it is at the very top of the pass) but you get the idea!

It occurred to me over this trip that I just may be a little screwed up (that mixed feelings things again). I moved to Richland because it was recommended that I move where I have a better support system. Okay, that makes sense. I understand the need for that. I also was told it would do me some good to be in a place where life is more peaceful, relaxing, where I am not so busy. Hmm...I seem to be busy no matter where I am. I am better about it, really I am, but I am not sure I KNOW how to just not be busy and how to just rest and relax. I am starting to realize that until I moved here those words, although I heard them and knew of them, were not REALLY a part of my life. I get bored really easy. I hate to just sit around, and although I don't necessarily just "sit" around, although sometimes I do, I feel like it because I am not working and doing things like I would like to. I get stir crazy! My house is basically always clean (I really have to be down for it not to be) because even when I don't feel good or am in pain I need something productive to do. This is a small town and there are just not a lot of options. It drives me nuts. I get depressed easy and I know some of that has to do with the meds, but I think some of it has to do with my being bored and sometimes I just feel like my life doesn't have a lot of purpose anymore. That is the worst part of all of this. I mean, I KNOW it does, so don't get me wrong. I am a mom first and foremost. But, Nate is at school 7 hours each day. It does not take me that long to clean the house and do everything I need to do each day. Yes, there are days where I have more to do (doctor's appointments, running around) or am not feeling good so I will get more sleep, but sometimes I feel like I am going to go out of my mind.

When I get out on the open road, it is like this huge release for me. It is like I get this burst of energy (okay, mentally, my body can't always keep up) and then when I am in the big city (in this case Seattle) I just seem to be so happy! It is like life is put back into me. I know I have said it before, but I really do miss being in a big city. Only thing is I know it is not good for my health. So, I just don't know what the solution is. It is strange too, because I am not even there long enough to go do a lot, or have the money to spend to go out and do a bunch of things. It is the small things (okay, not so small) like being in traffic (call me crazy). I love big city traffic. Being in the middle of downtown where you are surrounded by a bunch of great big huge buildings. For me, it is like all the stress that has built up is just instantly released the minute I arrive. It is almost like returning home.

Speaking of home.....this time of year the Columbia river is so pretty. I live about 5 blocks away from it. I am hoping that I can continue to feel better and even get to the point where I can take Buddy to the river on a regular basis this summer. Last year we did not get to do that much because we moved here in August. He is a funny dog, scared of the water. We were just getting him to where he would go in a little more when summer ended. I am hoping that by the end of this summer he will learn to love it, and have fun. My dog, Buddy, was always an indoor dog and until he came to live with us he never really got to play. I even question if he was somewhat abused (in the way he was trained). Anyway, I hope to be able to feel well enough that he can get out and have some fun as well.

Justin ended up having to go back to Idaho (work stuff) on Saturday, so we took Nathan out to dinner and to a movie. He had fun. He is still really having a difficult time with everything. Now whenever the subject of "MS" comes up he just gets angry. I just think that he does not understand and more than anything does not know how to control how he feels about it. It really worries me. I hate to see him in pain and upset over this, but I almost don't know what to do for him that I am not already doing. I have tried to talk to him and he does not want to talk about it. I wish he would. I have gotten him into counseling and set him up with a case manager who will help me to help him become more involved with extracurricular activites. Short of someone coming up with a cure or me just getting better, I am not sure what will make him feel better, however. Any suggestions?? I know some of you had parents with MS or maybe have children about my son's age (11) who have been angry because of all of this. He has even gotten to the point where now he is saying things like one minute he loves me and he is helpful and kind (which is more like his true nature), the next he hates me, hates this illness, wishes I would just die already, wishes MS would just die already, that I am a bad mom because I make him live with all this, and that maybe he should go live somewhere else. Then he gets sad and depressed and feels really bad for all of the mean things he said to me because he did not mean them. That is when he does finally break down and cry, but even then he still does not want to talk about it. He is just so angry about this. I am not sure how to help him.

I have been planning to join the gym so that I can start to swim, which is still in the works (just waiting on a couple of last things to get done, one being my f/u from my DEXA tomorrow). I am also working with the nutritionist, doing exercises at home as instructed by the physical therapist and taking my medications as planned. I am doing all that I can (or at least I think I am) to try and be as healthy as possible for the both of us. I am planning on taking Nate for a vacation this summer. It will probably not be anything big (last year we went to Disneyland). I have not decided where or when yet. I need to get online and do some research. When we lived in Utah, Justin and I would always take Labor Day weekend (which is a long weekend) and have a small family vacation together. It has always been very important to us to make sure Nathan understands that he comes first. One year we took the week before and went to Yellowstone and camped at Henry's Lake. Another year we went to McCall, ID, this time rented a cabin and a ski boat so Nate could drive the boat out on the lake (this was more for fun). He got to go fishing but the best fishing is in the rivers (or at least at that time of year it was). Last year was the first time that Nathan ever went to the ocean and that was very brief so I was thinking that maybe we could go to the beach, maybe somewhere along the Oregon coast (which happens to have some of my favorite beaches) or my dad suggested Longbeach, WA.

Well, I hope you are all doing well. Please take care of yourself.

Now for more music from Washington State.....

1 comments:

amanda said...

I'm glad that you had a good time on your "vacation". It is always nice to get out isn't it?

As far as Nathan, I have an 11 year old and he is almost the same way. I feel so bad and am also at a loss at what to do or how to explain it any better. I think it will have to get easier for us and for them at least I hope so.

I like the Presidents of the United States I remember when that song came out and everyone and I mean EVERYONE was singing it. Maybe I will do some research on musicians that came from my area. the only ones that I am aware of that are VERY popular are the Goo Goo Dolls. I have been to like 5 or 6 of their concerts. they are defintely a great band.

Well I hope that you are doing well and enjoying the nice spring weather!!!


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).

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