Adam Szkudlarek
You may have noticed that for the past month or so I have been playing music exclusively by Adam Szkudlarek. And, you may have asked yourselves who is that, as you have not ever heard of him on the radio or at the local CD store. Adam was a friend of our family.
He came into our lives about fifteen years ago when he married the daughter of my parents best friends. Adam was a carpenter by trade, but music was his passion. He was in several bands around the Seattle area in his youth, but since we have known him, he played for family and friends, but mostly for himself. He could play and sing for hours on end without caring if anyone was listening. Almost every Sunday he hosted a jam session in a grove of old cedar trees in his back yard. At times as many as 35 musicians showed up. The CD these songs came from was recorded in a studio he built in his home, Shed Alley.
Adam especially loved singing Christmas songs and recorded this CD because one year while my parents were spending the holidays with their family (which my family did for many years) my dad pestered him into recording a Christmas CD. His daughters also sing on some of the songs. Listening to his music again brings back many wonderful memories.
This CD was recorded for the Christmas of 2003. Adam was diagnosed with terminal lung cancer in February of 2004 and passed away in August of 2004 at the age of 48.
For a final song this holiday season I leave you with one that had so much meaning for Adam. Both of Adam's parents were survivors of concentration camps during WWII and so this song struck him on a personal level.
Bring On The NEW Year!
*For a Slideshow of Christmas Pictures click on the picture to the left*
The holidays can bring forth many emotions for many differnent people. For me it has always been a time of year that I looked forward to....even when I lived away from my family. There has always just been something about this time of year. This year however was different. I know for me, my emotions have been running high and I have not been feeling good. I have been very emotional and have spent the last week or so reflecting on what the last year has been and where I would like to see my life go in the upcoming year.
Alot has happened this past year. Not only have we all had a lot to deal with in regards to my MS, but Nathan has had his own challenges both emotionally and acedemically, my dad has had two surgeries, a close friend of the family has been very sick (and just got out of the hospital today), my grandma was in the ICU at the first of the year, and my grandpa passed away. Of course there have been positive things to happen this year as well. On the MS front we raised just over $2000 for the Everybody Falls CD fundraiser for the MSAA (and hopefully can do more in 2007). I became an Ambassador for both the NMSS and the MSAA, started this blog and met all of you, not to mention I obtained the services of a brilliant neurologist in Seattle! :) My sister got into a group home and is doing great....better than she has in a long time, my parents purchased a home....things work out how they are supposed to I think, even when we just don't understand why things are happening to us.
I have come to realize that I maybe have not handled things the best that I could have this past year....year and a half or so (since I have moved to Washington). I moved here because I HAD to because of my health. It was the right thing to do and I am glad that I did it NOW...but I was not ready to do it at that time. I came here because I was told that I had to move to where I would be closer to my support system.....that the stress I was under with working, school, being a single mom, everything I was doing was too hard on my MS, my health in general and I could not keep up at that pace. Well, this is what I have learned. Of course I was given the best advice I could have been at that time....they were wise to give me such advice and should have done so, however, what happened is I ended up moving and not working (like it was suggested), lived off my savings as long as I could (which was stressful in itself) while I awaited the whole SSI/SSDI process....which has been more stress (although I am grateful for the benefits I do get...I know some people have it worse than I do). I have had 3 relapses and this last episode which was not a relapse or stroke like originally thought but a complicated migraine. So, stress from work or no work....the result is probably about the same. I still have progressed, I still have had relapses. The difference is that now I have a crappy income, little to no health benefits (depending on the time of the year...thanks to the spenddown I now have as I am not eligible for Medicare for two years), and from a positive standpoint I do have a wonderful support system. My parents are always there for me.
When I first moved here I got settled in, but I kind of hid from the world....I became depressed for the first time in my life. I was being forced into a situation that I was not ready to deal with. I had no control. Hmmm.....sounds a lot like what we deal with in the MS world. Me, being very much a control freak, did not do well. This only fed the depression and I quit doing the few things that would have been my saving grace...going to Church, being with my family more, keeping in contact with my friends. What I did instead was throw myself into the MS world, which had both some positive and negative outcomes. I ended up with this blog and met all of you....that has been very positive. I also got involved with the NMSS and MSAA, also postive. What I did that I would say is probably negative is that I started to let MS take over my life.....what I mean by that is that I focused so much on MS, with the blog, news, organizations, etc. that I was neglecting other aspects of my life. I had to finally take a step back and realize what I was doing, although I had good intentions was not healthy. I had to find a balance.
I think what it was is that I miss working, hate not being able to get up in the morning like I used to and live the life that I had planned for myself. I would give anything to be able to do that again. I hate the fact that I went to college and busted my butt so that I won't be able to put that education to use. So, I put that same energy that I would have used at a job into everything to do with MS. The problem is that that is counterproductive. I was not getting the rest I needed.....I was not slowing down and taking care of myself the way that I needed. Plus, I was still upset, depressed, and in some ways angry at my situation. Finally I came to realize that was not the way to do things. If I am to get better I must slow down. I must take things day by day. I have to save up those spoons. :)
This next year I have some new things to look forward to. I have a few things MS related on the burner....Of course I am moving forward with the Novantrone, which I am excited about because this time I know to pace myself. I am also continuing with my duties as an Ambassador for the NMSS and MSAA, which means I will take on a few projects as I am able. The trick is that I need to learn to say no if I am not feeling well (something I am getting better at....I have always been more of a people pleaser, and this year it is my goal to put my health first). The Everybody Falls CD fundraiser continues...so if you have not gotten your copy.....go get it! Also, there are a few things going on with the NMSS. If you live in the Greater Washington Chapter then you will want to know of some events coming up soon (Advocacy Day, Sunnyside, Women's Retreat, & More). I have a "project" I am working on with Dave that should be fun when we get it up and running....it is non-MS related and just for fun! I have been given a new calling at Church which I am very excited about.....Church Historian and I was also put in charge of doing the newsletter (I have so many ideas to get it up and running electronically....we shall see, lol). I figure I have a lot of time to relax, take things day by day, and take care of my health. I don't want to waste another day being upset and depressed about what life has handed me, because I can't do anything about that anyway, but move forward. I know that everything happens for a reason and I have always known that.....it just seems that some how I have gotten lost, and I have been coming back around the last few months, but it is important that I continue on a more positive path this upcoming year. God, Family, my health, my friends...these are the things that are important.....everything else can wait for another day! Now I just have to remember these things from day to day....I have to remember not to get bogged down and caught up in life.
I hope you have had a good year 2006 and that the year 2007 brings you nothing but the best. Take care!
The holidays can bring forth many emotions for many differnent people. For me it has always been a time of year that I looked forward to....even when I lived away from my family. There has always just been something about this time of year. This year however was different. I know for me, my emotions have been running high and I have not been feeling good. I have been very emotional and have spent the last week or so reflecting on what the last year has been and where I would like to see my life go in the upcoming year.
Alot has happened this past year. Not only have we all had a lot to deal with in regards to my MS, but Nathan has had his own challenges both emotionally and acedemically, my dad has had two surgeries, a close friend of the family has been very sick (and just got out of the hospital today), my grandma was in the ICU at the first of the year, and my grandpa passed away. Of course there have been positive things to happen this year as well. On the MS front we raised just over $2000 for the Everybody Falls CD fundraiser for the MSAA (and hopefully can do more in 2007). I became an Ambassador for both the NMSS and the MSAA, started this blog and met all of you, not to mention I obtained the services of a brilliant neurologist in Seattle! :) My sister got into a group home and is doing great....better than she has in a long time, my parents purchased a home....things work out how they are supposed to I think, even when we just don't understand why things are happening to us.
I have come to realize that I maybe have not handled things the best that I could have this past year....year and a half or so (since I have moved to Washington). I moved here because I HAD to because of my health. It was the right thing to do and I am glad that I did it NOW...but I was not ready to do it at that time. I came here because I was told that I had to move to where I would be closer to my support system.....that the stress I was under with working, school, being a single mom, everything I was doing was too hard on my MS, my health in general and I could not keep up at that pace. Well, this is what I have learned. Of course I was given the best advice I could have been at that time....they were wise to give me such advice and should have done so, however, what happened is I ended up moving and not working (like it was suggested), lived off my savings as long as I could (which was stressful in itself) while I awaited the whole SSI/SSDI process....which has been more stress (although I am grateful for the benefits I do get...I know some people have it worse than I do). I have had 3 relapses and this last episode which was not a relapse or stroke like originally thought but a complicated migraine. So, stress from work or no work....the result is probably about the same. I still have progressed, I still have had relapses. The difference is that now I have a crappy income, little to no health benefits (depending on the time of the year...thanks to the spenddown I now have as I am not eligible for Medicare for two years), and from a positive standpoint I do have a wonderful support system. My parents are always there for me.
When I first moved here I got settled in, but I kind of hid from the world....I became depressed for the first time in my life. I was being forced into a situation that I was not ready to deal with. I had no control. Hmmm.....sounds a lot like what we deal with in the MS world. Me, being very much a control freak, did not do well. This only fed the depression and I quit doing the few things that would have been my saving grace...going to Church, being with my family more, keeping in contact with my friends. What I did instead was throw myself into the MS world, which had both some positive and negative outcomes. I ended up with this blog and met all of you....that has been very positive. I also got involved with the NMSS and MSAA, also postive. What I did that I would say is probably negative is that I started to let MS take over my life.....what I mean by that is that I focused so much on MS, with the blog, news, organizations, etc. that I was neglecting other aspects of my life. I had to finally take a step back and realize what I was doing, although I had good intentions was not healthy. I had to find a balance.
I think what it was is that I miss working, hate not being able to get up in the morning like I used to and live the life that I had planned for myself. I would give anything to be able to do that again. I hate the fact that I went to college and busted my butt so that I won't be able to put that education to use. So, I put that same energy that I would have used at a job into everything to do with MS. The problem is that that is counterproductive. I was not getting the rest I needed.....I was not slowing down and taking care of myself the way that I needed. Plus, I was still upset, depressed, and in some ways angry at my situation. Finally I came to realize that was not the way to do things. If I am to get better I must slow down. I must take things day by day. I have to save up those spoons. :)
This next year I have some new things to look forward to. I have a few things MS related on the burner....Of course I am moving forward with the Novantrone, which I am excited about because this time I know to pace myself. I am also continuing with my duties as an Ambassador for the NMSS and MSAA, which means I will take on a few projects as I am able. The trick is that I need to learn to say no if I am not feeling well (something I am getting better at....I have always been more of a people pleaser, and this year it is my goal to put my health first). The Everybody Falls CD fundraiser continues...so if you have not gotten your copy.....go get it! Also, there are a few things going on with the NMSS. If you live in the Greater Washington Chapter then you will want to know of some events coming up soon (Advocacy Day, Sunnyside, Women's Retreat, & More). I have a "project" I am working on with Dave that should be fun when we get it up and running....it is non-MS related and just for fun! I have been given a new calling at Church which I am very excited about.....Church Historian and I was also put in charge of doing the newsletter (I have so many ideas to get it up and running electronically....we shall see, lol). I figure I have a lot of time to relax, take things day by day, and take care of my health. I don't want to waste another day being upset and depressed about what life has handed me, because I can't do anything about that anyway, but move forward. I know that everything happens for a reason and I have always known that.....it just seems that some how I have gotten lost, and I have been coming back around the last few months, but it is important that I continue on a more positive path this upcoming year. God, Family, my health, my friends...these are the things that are important.....everything else can wait for another day! Now I just have to remember these things from day to day....I have to remember not to get bogged down and caught up in life.
I hope you have had a good year 2006 and that the year 2007 brings you nothing but the best. Take care!
Preparing For Christmas.....
December is always a busy time of year.....not only do we have Christmas to celebrate but we have Nathan's birthday! As I mentioned previously, Justin came into town for Nathan's birthday. He has never missed a birthday, he was even there for Nathan's first birthday (before they even knew each other...that is another story for another day, lol). Anyway, the weekend was great. Nathan had a lot of fun and when it came time for Justin to go home...well, he got stuck here. His car broke down.....not once, or twice, but three times. He was stuck here for a week. Nathan was loving it, poor Justin (although he had a great time with Nathan) was not. He was stressed out beyond belief and although his work was understanding and he had loads of vacation time he could take....this is not what he needed right now. Apparently it was just what Nathan needed though. He has been so much better since. He seems happier, it was like just what the doctor ordered. It is funny how things happen sometimes. This whole experience has even made Justin realize that he wants to be closer to Nathan and Nathan needs him here....so he is planning to move here soon (as soon as he can transfer or get a job in this area). Like I said, funny how things work out.
This week has been a little more mellow. Just a little. Nathan is out of school for the next two weeks for the holidays. I went with my mom to do the last of the Christmas shopping last night and then she took me out to dinner at Red Lobster (thanks Mom! mmm.....it was good) Nathan is busy doing his OWN Christmas presents this year. He is so cute...he bought some canvas' and charcoal pencils and he is going to do drawings for the family. He is turning into quite the little artist. He insisted that he do his own thing and I think it is great that he wanted to do that.
He also is taking on this whole attitude of "I am 12 now which means I am a man now so I have to be more mature and act like a man" thing....he is funny. Kids....they crack me up. He is in Boy Scouts and has moved into a different level now that he is 12 and so I think that is part of it....that and he moves out of Primary into Deacons at Church and that comes with more responsibility. It is all good for him. lol Whatever it is, he seems to be happier and behaving better both at home and school....now I just have to hope he keeps it up. :) I think he will learn a lot of great skills with Boy Scouts though and it will be a positive experience for him, so that's good.
Well, I guess I should get back to wrapping presents.....I am in charge of wrapping my dad's presents so he doesn't figure out what he is getting, seeing how he is now retired. lol
I am not sure if I will blog again before Christmas as I will be busy with my family, so please know that I am thinking of each of you this holiday season. I wish you all the very best and hope that you have good health and are able to spend the holidays with your loved ones. Please take care of yourselves. Merry Christmas!
Quick Note
Just a quick note to let everyone know that things have been crazy around here this past week, which is in part why I have not been in touch with anyone (through email, blog, or phone). I promise that as soon as things settle down a bit I will fill you all in as to what has been going on. Until then....enjoy some music that will hopefully get you in the holiday spirit. I hope all of you are doing well. Take care!
12 Years OLD!
Boy how time flys by! I can't believe that my son is 12 today. We had his party yesterday, which was not really a party as much as it was a couple friends coming over to hang out. He is just getting to old for kids parties I guess. lol
Justin got into town on Friday, which was a present in itself. :) It is always wonderful for Nate to have his dad around. So the three kids, Justin, Katie and I went to see Unaccompanied Minors. It was not too bad. Even us adults enjoyed it. After the movie the kids decided to take a few pictures. They had one of those booths where you can get the silly pictures (the kids did the one with the Wanted label at the top and the $1,000,000 reward at the bottom). I will post it as soon as I can get it scanned. Very funny pics! Anyway, Nate's friend Markus is moving to Germany next month for a couple of years and so they wanted to get something that each kid could have as a keepsake if you will. They then all came to my house for pizza, cake, and ice cream where they were hyper but fun. Nathan is having a wonderful birthday weekend.
I am really tired...but that is to be expected. My family have been wonderful though. My parents, sister, and Justin have all really been there for me between helping out the last three weeks and then this weekend with the kids. I am not sure what I would do without all of them. It has been nice for Nathan to be able to just be a kid and enjoy his birthday without my health getting in the way of things (as I am sure you all know how that can be....pain in the butt!) I do what I can to let him have a normal childhood (considering) but there are times that he has to help and be the man of the house too....that can be hard. It has been nice to let everyone else come in and just take over for me......to take over and let him just not worry, not think about anything, but to play and just be.
I looked everywhere for the Beattles "Birthday" song and could only find a cover song....so here you go! This is for Nathan! Happy Birthday!
Birthday by The Inmates
Feeling Better
Finally I am feeling better. This morning was the first morning I have woken up without such a severe headache. I still don't have much of an appetite, but it is getting better. My nausea seems to be very mild only in the morning and although I do still have a headache it is improving. Yay! It is about time!
I emailed my neuro and gave her an update of the good news (at least I consider this good news...may be slow coming but it is better than what I was going through). I also told her about my wonderful side effect. The dreams seems to be settling a little (very little...but I will take whatever I can get) but I am still not sleeping well. For now she wants to just see if my body will adjust to the medication. I suspect just like everything else with this illness....it will just take time. Patience is not my best attribute. lol
So, just as I am now feeling better my son comes home from school yesterday not feeling good. Isn't that how it always happens? My poor baby. Just before his birthday too (It's on Sunday). He tells me his stomach hurts, he's cold, and I feel his head and he is burning up. I take his temp and it's 100.6. Not too high, but then I check his throat and it is red and swollen. Off to the doc we go. He does not have strep...thank goodness. He does have an URI however. So, he is home from school today and doing everything he can to try and feel better because his birthday party was scheduled for tomorrow. He is so sad thinking he might not get better before tomorrow. :( I told him we will just have to wait and see what happens. If we have to reschedule it to next week we will , but if he is feeling better than we will still have it. Fortunately he no longer has the fever and the doc put him on meds.
Justin is on his way in from Idaho for Nate's birthday. We are not really doing anything big this year as Nate just wanted to go to the movies and out for pizza with some friends. I think he is at that age where the typical kids parties are just not cool anymore. I am not sure. Anyway, I sure hope he is feeling better tomorrow so everything can go as originally planned.
Hopefully all of you are doing well. Have a great Friday and wonderful weekend. Take care.
I Know, I Know...
I know, I know.....make up my mind already. The thing is. I liked the dragonfly template, but I just was not satisfied with it. Not to mention after a few days the background color bothered my eyes...it was just too dark!
So, after some fooling around this is what I have come up with. I really like it. Okay, I know....I said that before. And, this template is not perfect either. I have found a glitch. It does not seem to be completely compatible with Firefox....for some reason. I am not sure what that is all about. You can still access it on Firefox and you can still read it and get everything like you would on any other browser, but that one browser just does not show it the way it was meant to be. Hmmm.....
So, give me your input. For the full effect you will need to use something other than Firefox (sorry for those of you who are faithful FF users). If I was more of a computer geek I could probably figure out the problem and fix it, but I am just not quite to that point yet. Maybe I need to send the coding over to mdmhvonpa and have him work on it! LOL We all know he is the techie in the group. ;)
Now that I have updated you all on that......here is what has been going on with me the last few days. My headache is still here, but the good news is my appetite is back and the nausea seems to be (although slowly) going away! I am starting to get around a little bit better as well. Now that I have said that I am making sure this time that I don't over do things, so in preperation of the holidays my wonderful family have hired a housekeeper to come do deep cleaning around my house so that I don't have to worry about anything but just the maintence stuff. This last couple, three weeks was no fun for any of us and none of us want to go through that again (even my neurologist said to me as I was leaving her office that my email gave her some chest pain....sorry about that!) Of course I would just prefer to be healthy and never deal with any of this, but the good Lord seems to have a plan that consists of me with this illness....so whatever, right? I just know that for the next little while I will be taking it easy. With the holidays quickly approaching and my next Novantrone scheduled for the first week in January. I think it is best that I take it easy for a while.
I know I have not left comments for all of you, but I have been reading. My eyes are still bothering me some (hence the change of template once again) and I have noticed one new thing come up. I am sure it is just me getting used to the new medication....actually when I get done here I think I need to look it up. I started taking Verapamil and I have been having some really vivid, strange dreams.....some are really scary. I am not sure if this is a side effect of the medication. I have heard of these types of side effects with anti-depressants, but this is not that kind of medication. Oh, geez....I think I will just go look...now I am curious.
Okay, well I just answered my own question. LOL I just looked up on Medline plus and it says that if the side-effects listed become severe or don't go away then to call your doctor. On that list is vivid, unusual dreams. Interesting! Well, I have not been on the medication for long, so I guess I will just have to wait it out and see. The last couple of nights have not been as bad, and I would not even want to try and discribe the first couple of nights. It was like watching some horror movie or something....almost like a night terror is what I thought, but I was not sure because I have never had one of those. It always amazes me how medication can help us in some ways but there is always some side effect that comes from it. Sometimes it does not last and/or is not big deal and sometimes it is major (like I was reading that poor Linda over at Braincheese had a really bad reaction to Tysabri....everyone should go over and wish her well. I hope you are doing better!) Just goes to show that nothing is perfect. Fortunately there are a lot of wonderful people in this world working long and hard to try and find the answers to help us! :)
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About Me
- Jaime
- 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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