I just have to say that being "undiagnosed" is not easy. Having all the symptoms of MS is hard enough but on top of that knowing that there is still no clear answer is hard. I hear all the time from people, usually other MS'ers that it could be that the lesions are too small or "hidden". Makes me feel like there is some time bomb waiting to go off in my head. Not to mention the nagging feeling that I should be taking a disease-modifying drug and can't without a diagnosis. Oh this list goes on and on.
Then, oh then, there is my precious family and friends. Those who refuse to talk about it. As I like to put it, they sweep it under the rug. Let's pretend it doesn't exist and it will go away. Ah, yes, that will happen. I can see it now, if we forget long enough it will magically disappear. Why didn't I think of that all of this time? Here I was thinking to myself that while my hand just couldn't quite grasp that bottle of water, or my face was numb for a few hours or my legs weren't working quite right that if I would just think that it would go away.....it would.
I know I'm being a little sarcastic, Ok a lot! It's just that when you've lived this way since 2003 and here it is 2009 and still no definitive answer you can't help but be a little......frustrated. Most people tell me, oh it's ok to be upset. Well see I'm not really upset in a sense as I'm just downright frustrated with Dr's. I mean if you tell me you are going to do one thing and you think one thing then why not follow through? Why change your mind at the very last second? Well, I actually have an answer for that. My fellow MS group members say... BECAUSE they only practice medicine. Oh I know, that's harsh, but think about it. Everyone's body is not the same. We don't work the same way or get sick the same way. Medicine does not heal us the same or react the same. In fact I should be a living breathing case for that. My body does not like most medication. I have an incredibly hard time with medicines. Also, I'm proof that everything does not go by the book. My 10 surgeries are proof of that. So my MS should go by the book???? Geee.......
Well just something to think about and I actually think about it every now and then like right now as my feet go numb and I can't feel my toes. In a moment I'll get up to go to the living room and have to stumble because I won't know my feet are there. One day at a time I just keep saying and while it sounds like complaining sometimes, I'm smiling! I'm blessed and I'm fortunate!
Wednesday, May 20, 2009
Friday, May 15, 2009
Quickie
No, get your mind outta the gutter! That's not what I meant! This is just a quick blog! I just had to share this little funny thing. It really has to do with spouses. Not so much mine, but just in general. I read a little funny today that made me laugh out loud. It doesn't take much anymore to make me truly laugh out loud, but this was funny and I thought worth sharing.
Recently spotted on a bumper sticker: I believe in dragons, good men and other fantasy creatures!
Oh now that was good! So just keep believing! Some things really are worth the imagination! HAHAHAHAHHA!
Recently spotted on a bumper sticker: I believe in dragons, good men and other fantasy creatures!
Oh now that was good! So just keep believing! Some things really are worth the imagination! HAHAHAHAHHA!
Thursday, May 14, 2009
Nice Surprises
I think it's nice to be surprised and even nicer when it's a good surprise. I never really liked surprises all that much. In fact I would tell my husband not to throw me a surprise party because I didn't really want to deal with the surprise or I'd probably find out anyway. Well I've outgrown that some and now know that it's fun to get little surprises here and there. I also have realized that life is too short to not enjoy the surprises in life.
As I've come to terms lately with just how sick I am and how my body just doesn't seem to work quite right sometimes, I want these surprises in life. You might be thinking why? Isn't having your body fail in some ways enough of a "surprise"? Well I don't want this surprise, but I've learned to live with it as I recently told a friend! There are just some things you have to "live and let go" or something like that. Learn to laugh at yourself, be silly, dance in the rain, enjoy a friend, lay with your children at night, read a good book, take a nap, walk barefoot, say I LOVE YOU!
Sometimes we don't appreciate each other enough. Lord knows I don't. I'm learning though. No, I'm not dying or anything and it's not fatal, but I've learned that when life doesn't go the way you planned that you may not always be promised tomorrow. It doesn't matter if something is fatal or not. You can be as healthy as a horse. There are things I can't do with my children, can't do with my husband, my parents, my friends and I would do anything to have the last 5 years back so that I could do some things that I didn't do.
Ohhhhh enough that! I am however going to walk in the Relay For Life! Yes, I probably shouldn't, but I am. I'm looking forward to it and it has some very special meaning to me this year. I've had one friend to say she was going to come and walk with me. I think she just wants to make sure I'm ok, but you know.....I'll enjoy the company.
I never know who reads this but to those that do, I appreciate it! I hope you enjoy it or that it helps you in some way. If you get the chance leave a comment, I'd love to hear from you.
As I've come to terms lately with just how sick I am and how my body just doesn't seem to work quite right sometimes, I want these surprises in life. You might be thinking why? Isn't having your body fail in some ways enough of a "surprise"? Well I don't want this surprise, but I've learned to live with it as I recently told a friend! There are just some things you have to "live and let go" or something like that. Learn to laugh at yourself, be silly, dance in the rain, enjoy a friend, lay with your children at night, read a good book, take a nap, walk barefoot, say I LOVE YOU!
Sometimes we don't appreciate each other enough. Lord knows I don't. I'm learning though. No, I'm not dying or anything and it's not fatal, but I've learned that when life doesn't go the way you planned that you may not always be promised tomorrow. It doesn't matter if something is fatal or not. You can be as healthy as a horse. There are things I can't do with my children, can't do with my husband, my parents, my friends and I would do anything to have the last 5 years back so that I could do some things that I didn't do.
Ohhhhh enough that! I am however going to walk in the Relay For Life! Yes, I probably shouldn't, but I am. I'm looking forward to it and it has some very special meaning to me this year. I've had one friend to say she was going to come and walk with me. I think she just wants to make sure I'm ok, but you know.....I'll enjoy the company.
I never know who reads this but to those that do, I appreciate it! I hope you enjoy it or that it helps you in some way. If you get the chance leave a comment, I'd love to hear from you.
Wednesday, May 13, 2009
Know It Alls
Why is that people who "appear" to know everything really don't? The fact of the matter is that they only manage to get on people's nerves. I know many people like this and they drive me nuts. For instance.....if I was to tell a certain person that I have a degree in Criminal Justice (I do) then they might precede to tell me everything under the sun about law enforcement, criminal justice, the law, etc. We could get into a discussion where they would inevitably tell me that they know more about the said subject than I do even if they have either A. No degree or B. a degree in something else. Now I do not by any means claim to be an expert on anything, I mean anything at all, but if I'm talking to you about something or asking you about something why on earth would you even take time to open your mouth if all you are going to do is blabber on about a topic you know nothing about?
Also if someone is searching for an answer to something, and for this I'll be very vague, why is it that know it alls just automatically have to jump in with all the answers. They know the when, the where, the how and the why. I think the reality is that they don't know and just want to seem like they do. Is this a self esteem issue? Was this a problem as a child? Did no one ever let them speak and now they feel the need to speak on every issue even if the topic of which they speak sounds utterly stupid when coming out of their mouths? Just some questions to ponder from a not so know it all.......
Also if someone is searching for an answer to something, and for this I'll be very vague, why is it that know it alls just automatically have to jump in with all the answers. They know the when, the where, the how and the why. I think the reality is that they don't know and just want to seem like they do. Is this a self esteem issue? Was this a problem as a child? Did no one ever let them speak and now they feel the need to speak on every issue even if the topic of which they speak sounds utterly stupid when coming out of their mouths? Just some questions to ponder from a not so know it all.......
Thursday, May 7, 2009
Making Decisions
Well it seems that tough decisions are on the menu this week in our household. It went from having to decide with Dr's about the medicine I was going to be on and how it would affect my body to.....
Now it looks as if the private/Catholic school that my 2nd grade son is at is going to be possibly closing next year. My twins were also going to be attending this school next year for preschool. In just one day I've had to make numerous phone calls trying to arrange many things for a whole years worth of schooling and for 3 children.
So what you may be asking has happened? Well for starters yesterday morning my mother went to drop my son off at school and the doors to the school were locked and no one was able to get in. No one knew why they couldn't get in either. Many parents, teachers and students were standing outside or parked outside, even on the street waiting to be allowed inside the building. All of this was with no explanation. My mom dropped my son off with other classmates and teachers and she pulled out and was immediately stopped on the street by another parent. She pulled over and was asked if they could talk. She said of course and then information just flowed! Come to find out the enrollment which this year had been around 104 will drop next year to around 35. Also about 5 teachers will be leaving.
Of course my immediate reaction is, what will happen to my child and his academics? My son is relatively smart. He has come a tremendous way in 2 years! Will you put him with Kindergarten and 1st and 2nd grade? Will you just cram everyone together? There is 1 5th grader signed up for next year and the majority of the 35 are preschoolers!! Imagine my shock and astonishment that none of us had been notified at all.
Now back to why the school was locked..... well come to find out that the Police Department SWAT team was doing a training exercise across the street at the time. They had signs up and it was apparent that they were training. The principal went balistic and locked the doors! Only, she locked everyone else OUT!!! Does anyone else see an issue here? Oh and if I haven't said it before my husband works for the police department so I can find out for sure it was a training exercise.
I'm just very sad that it has now come to this that my son is going to have to go elsewhere and that all of my children will not be under one roof as we had hoped and wished for. It was such an ideal situation, especially with one of our twins being a respiratory patient. Our oldest knows what to do and we felt confident that he could help until one of us could get there. He could also be a comfort. Now they will not be together in one school except for ONE YEAR. That's so sad to us!
Just pray for our little family and for guidance for us that we may do the right thing for our children. It is so hard raising them and knowing that the decisions you have made are right because they forever impact the people they become!
Now it looks as if the private/Catholic school that my 2nd grade son is at is going to be possibly closing next year. My twins were also going to be attending this school next year for preschool. In just one day I've had to make numerous phone calls trying to arrange many things for a whole years worth of schooling and for 3 children.
So what you may be asking has happened? Well for starters yesterday morning my mother went to drop my son off at school and the doors to the school were locked and no one was able to get in. No one knew why they couldn't get in either. Many parents, teachers and students were standing outside or parked outside, even on the street waiting to be allowed inside the building. All of this was with no explanation. My mom dropped my son off with other classmates and teachers and she pulled out and was immediately stopped on the street by another parent. She pulled over and was asked if they could talk. She said of course and then information just flowed! Come to find out the enrollment which this year had been around 104 will drop next year to around 35. Also about 5 teachers will be leaving.
Of course my immediate reaction is, what will happen to my child and his academics? My son is relatively smart. He has come a tremendous way in 2 years! Will you put him with Kindergarten and 1st and 2nd grade? Will you just cram everyone together? There is 1 5th grader signed up for next year and the majority of the 35 are preschoolers!! Imagine my shock and astonishment that none of us had been notified at all.
Now back to why the school was locked..... well come to find out that the Police Department SWAT team was doing a training exercise across the street at the time. They had signs up and it was apparent that they were training. The principal went balistic and locked the doors! Only, she locked everyone else OUT!!! Does anyone else see an issue here? Oh and if I haven't said it before my husband works for the police department so I can find out for sure it was a training exercise.
I'm just very sad that it has now come to this that my son is going to have to go elsewhere and that all of my children will not be under one roof as we had hoped and wished for. It was such an ideal situation, especially with one of our twins being a respiratory patient. Our oldest knows what to do and we felt confident that he could help until one of us could get there. He could also be a comfort. Now they will not be together in one school except for ONE YEAR. That's so sad to us!
Just pray for our little family and for guidance for us that we may do the right thing for our children. It is so hard raising them and knowing that the decisions you have made are right because they forever impact the people they become!
Monday, May 4, 2009
Getting By....
Well what can I say other than that I just don't do well with blogging obviously. I'm going to try to change that now and really keep up with this better. I can't say it will be every day or anything, but we'll see. So let's see what's new with us. Well my children are all the same except one year older, yes each of them. The twins are 3 and mischievious as ever! They are into everything! I think there must be some written law somewhere that says that 3 year olds must destroy our homes. Mine are working on it. They have contemplated together to drag it out for the entire year! My oldest son turned 8. He is very handsome and is really coming into those teenage sort of years which is scary for Mom! He had school pictures taken recently and I swear he looked like a little man. There is this one little girl in his class that calls every so often, he swears just for homework but 'ol Mom knows better!
My husband is still much the same too and works hard and often. It's the job of the CSI and the police department must be demanding. I have a love/hate relationship with his job. Have I said this before? I love to hate it! HAHA! No, really it's a good job. It's just aggravating sometimes. You know, like when the phone rings at 2AM or when we are just sitting down for dinner and his phone beeps. That's when I want to yell "HEY this is my time!" Oh well!
So that brings me to me. I am pretty much the same with a few minor dings. Went to see some doctors and things recently and had some medicines adjusted and switched and such. Trying to get my body to adjust to them is a whole other ballgame. You know medicines come with warning labels and all this information but really your body needs one too! I walk around like a zombie for a day or two trying to adjust to the "drowsiness" of the new meds! Well it's good sleep I suppose.
My inlaws were here over the weekend and I accidentally, yeah we'll call it that, ran into the wall and my MIL asked if I did that often. I said yeah sure! Then laughed. I thought it was funny because they don't see me enough to know that actually I do do that often.
The latest from the Rheumatologist was that he still believes I have MS, but with no definitive answer we will go with.......are you ready for this mouthful....?? Severe Fibromyalgia with MS symptoms, Parasthesia and Memory Loss and maybe even throw in a little Neuropathy in there. Geee..... and I thought everything was fine?
So that's the latest from our world and I promise to try to do a little better on keeping up with the adventures that are brewing here. It's late and I'm exhausted and what are you doing still reading? Goodnight~!
My husband is still much the same too and works hard and often. It's the job of the CSI and the police department must be demanding. I have a love/hate relationship with his job. Have I said this before? I love to hate it! HAHA! No, really it's a good job. It's just aggravating sometimes. You know, like when the phone rings at 2AM or when we are just sitting down for dinner and his phone beeps. That's when I want to yell "HEY this is my time!" Oh well!
So that brings me to me. I am pretty much the same with a few minor dings. Went to see some doctors and things recently and had some medicines adjusted and switched and such. Trying to get my body to adjust to them is a whole other ballgame. You know medicines come with warning labels and all this information but really your body needs one too! I walk around like a zombie for a day or two trying to adjust to the "drowsiness" of the new meds! Well it's good sleep I suppose.
My inlaws were here over the weekend and I accidentally, yeah we'll call it that, ran into the wall and my MIL asked if I did that often. I said yeah sure! Then laughed. I thought it was funny because they don't see me enough to know that actually I do do that often.
The latest from the Rheumatologist was that he still believes I have MS, but with no definitive answer we will go with.......are you ready for this mouthful....?? Severe Fibromyalgia with MS symptoms, Parasthesia and Memory Loss and maybe even throw in a little Neuropathy in there. Geee..... and I thought everything was fine?
So that's the latest from our world and I promise to try to do a little better on keeping up with the adventures that are brewing here. It's late and I'm exhausted and what are you doing still reading? Goodnight~!
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