Monday, December 3, 2007

My physical therapist comes this morning and my Home Health Aide comes this afternoon. Not looking forward to the deep tissue massage at all.


I need to log this, I think. I've been doing my best to deal, cope and fight these illnesess. But something never hit me like it did last night. I've always thought having all of these illnesess as something that I'm going to just be alright soon, like the flu or a cold, or even maybe something like surgery could help. I've never thought negative about them. Just here we go again if I have a flare up, or I can't sleep because of the pain, ect...
Last night, I was just watching tv. and something hit me and hit me pretty hard. "I'm not going to get better!" No matter how hard I try to fight, I'll still have them. Just like growing up with a seizure disorder, it doesn't go away. I had two baby's and they also have a type of a seizure disorder as well. My doctor told me even if I had 10 kids, they all would have some type of it. I don't want my kids to go through this! And I'm already seeing some signs of the fibromyalgia in my son! NO! It doesn't work that way. "I'm the only one that suffers, not my own children!" This is hard to write through my tears. bare with me. I'm not going to get better, I just get worse! Or if a doctor can get me the right medicine...I'm only going to stay that way at the time I'm given it. Like maybe just to stop my body from progressing. But again, theres that chance that no doctor can even know. I've been there with my epilepsy. I have medicines to try to prevent the seizures, but I still have them and they can and have also gotten worse at a few times. Like when I was first diagnosed, I had gran ma seizures, then throughout my life, they changed. Now I have myoclonic seizures.
Thats what hit me last night. About with all of the other stuff that I do have now! Plus, I'm still getting tested for other things! Oh joy! THIS is not a pity party...it's just me thinking and coming to a realization that no, I'm not going to get better and the chances that my own children can get all of what I have are pretty high! I don't like the odds of that. I don't want my grandchildren to inherit anything as well. They are not to be in this kind of pain, or have to live a life like this...I'm the one! I pray that they don't. It's not fair for them that I have these, and it's very likely that they too might suffer as well and I don't like that! I'm suppose to keep them all safe and sound in their lives. Not pass bad things on to them.
That depresses me to no end. I'm not going to get any better and the possibilities of them inheriting this is pretty high!
I've had other things on my mind that has lead to this. I cheerish life and always have. I used it all up every day with my children! I had so much fun with them and still do. But I won't be able to give that of me to my grandchildren. This isn't fair and yes, I know life isn't fair. I fight so hard to stay out of a wheelchair and by doing that, it makes my body worse! If I have a good day and I do things, it makes my body worse! Yes, at least I DO have life but I still am grieving. If you only knew how much I miss dancing and hiking. Dancing more then anything. I hear music and I have to tap my foot or my hand to it, but the real me on the inside of this vessel wants to jump up and dance. My soul hasn't changed and my body has and it's so hard to except. When you're young, you don't think about your adulthood like this.
I'm doing my best to teach my grandson to be able to use both hands, because you never know what will happen when you get older. Thats what I can give my grandchildren, of course all my love but to know that life is only but a gift and to use it wisely. Make good desicions. And just live!!! Have fun! I will always be there for them like I am my children.
It hurts to know that you're not going to get any better but to stay the same. To bad I can't go and pick out a new body to hold my loving and caring soul. Just things in life that no one will ever understand the why's and the how's.
None of this probably doesn't make any sense. But it does to me.
I miss living and taking advantage of the days that I could run with my children.


 


 

13 comments:

pharmolo said...

Can't imagine what that must feel like, Lisa. Don't blame yourself over anything, or what you might have passed on to your children. Sometimes, it's a case of grasping the nettle and planning for what has to be done when you deteriorate to a further point. Like in your house. With regards to your care and all that. But that's easier said than done.

Guido

hugsdoodlewacky said...

((((((((((((((((((((LISA))))))))))))))))))))Dont blame yourself,your SOn and Daughter wouldnt want you to.Its not your falt.I wish you had some kind fo strong pain killers to help you get through this.You have so many people who love and care for you.Have a good day.

my78novata said...

I think if you got mroe rest you could heal beter there had to be a way to get mroe rest. No wedont want our childre to go thru what we do

wwfbison said...

Don't beat yourself up about what you cannot change.  I hope you feel better.
Lisa

lanurseprn said...

This makes sense...we were taught in nursing school how people with chronic illnesses go through this stage. Believe me...what you're feeling is normal. But, don't blame yourself if your kids get it. That is not your fault. I'm sure you had no idea what lies ahead for you when you had the kids. I know it hurts to think of them like that, though.
Take care....and have a good day.
Pam

lisa41076 said...

Lisa, Hugs to you, I wish I could come over and give you a big Hug , Love Ya Lisa XO

specialadyfink said...

Sure wish you weren't going through all this.I know you must feel all alone even when there are people around.Like you have to do this all by yourself...it is so unfair(I said it even if you didn't) people should take notice that you never know what tomorrow brings --to savor each moment we're given....
**BIG HUGS**
~c~

sweetestsin52605 said...

That is why I get so upset at times, because I know you are only going to get worse and not better. I just try to not think about it. You are still 'able' to have fun with Kayden and 'Lil'. Show them the fun and awesome Grandma they have. Jeremy told me that he saw a commercial the other day about some pill that is supposed to help Fibromyalgia. I wish he knew the name. I am sure I saw the commercial before. Just try to cheer up, you have another grandchild on the way and you know Kayden adores you. We got our christmas/family pics taken today. We are going to get ALL of the pics ordered next Thursday and have them back by Christmas. They are all so cute and I KNOW you will LOVE them. :-)

Love ya mom!

kamdghwmw said...

I would not worry to much about passing this on to your children.  No sense in worrying about something you can't control. If they do get some of it then they will have learned from you how to handle everything. You are setting a great example for them.
Kelli
http://journals.aol.com/kamdghwmw/noonmom

changingnamesuck said...

My wife was diagnosed with fibromyalgia a few years ago and our lives were changed forever.  I am developing an online community for people suffering from fibromyalgia.  The online community, “You're Not Alone” ( http://fibromyalgia.ning.com ), will allow members to  participate in fibromyalgia-related discussions in the Forum, share their thoughts and ideas in their blog, and post their personal photos and videos.  There is no cost to join.  Members of the site follow a simple process to create their profile page, which they can later customize including a profile photo and additional details about themselves.  I created the project while participating in a Landmark Education leadership program.  Part of the coursework was to create a project that benefits the community.    When I had the opportunity to create a project that would make a difference in the community, it was only natural that my wife's illness would be the inspiration.  Landmark Education is an international training and development company, who is known for offering their flagship course The Landmark Forum (www.landmarkeducation.com).

ceilisundancer said...

This makes a lot of sense [what you wrote].  Sometimes, having these sorts of illnesses don't seem to make sense.  It must break your heart to start seeing signs in your son, too.  Stay dancing inside, in your soul:)  

merry1621 said...

You are not in charge of what happens, God is. God also is in charge of your children's health.  You can only stand by and help. Feeling bad about this is so understandable, but it won't change a thing. Not for your kids either.  I know that you are loved by them.  Hold that thought dear to your heart. Grieve if you need to, sometimes we have to.  Then live the best you can. Your kids accept that you are ill, don't worry they will always love you as will your grandson. Merry

malagutigrrl said...

That's recently hit me, too.  It's why I been having a rough time of it.  Even though I'm aware of everything that's happened to me this year it's like it's been flowing OVER me instead of in my brain and registering.  Yes, I have MS.  No, there isn't any cure.  No, despite my first doctor telling me I'm "fine," until I go into remission we won't know whether I'm actually fine or not. Yes, Pop is DEAD.  No, He's NEVER coming back.  Right before Thanksgiving I thought I was gonna have a nervous breakdown over it.  All of it slammed into me at once.

But as far as your kids go... and the possibility of them getting what you have, try to take comfort in the fact that when you had them you didn't know any of this was going to happen.  You love them with all your heart and they love you with all their hearts and no matter what, you have each other.  
It's ok to grieve.  Grieving is GOOD.  I'm glad you are grieving.  It's part of the road back to the light.