Wednesday, March 26, 2008

.....Just to let you know, nothing in this journal's entry is toward anyone in specific, I use it to write my feelings, and about my illnesess, and in hopes it might help someone else as I do.I do not pretend nor imatate to be someone I'm not. And if you might take an entry wrong and feel that it is about you, I'm sorry but It isn't, it just may seem to coincide with your own life. And if there is something in what I write that "offends" you, options; don't read, or realize that this IS real life, and learn more about it! I also know that what I write in MY journal, that NOT everyone will agree with me and I don't expect them to! God bless you!......


 


I've been sitting here fighting pain in my body, so I can write.
It's grabbing me without any remorse or any real reason. Yet I'm still sitting here fighting it. I don't know why. It's making me very sick to my stomache.
From what I've learned, this pain is fibromyalgia. I'll get muscle cramping that can make me go to the floor. It does nothing but 'take' from you.
When I was a baby, I was diagnosed with epilepsy having gran ma seizures. While growing up, I got used to the tests and the medicines and what it made me do. involuntary movements were hard to hide, and even to fight. Then, it became nothing to me because I just got used to living that way.
I also had to 'fight' off my stepdad. This time, I didn't have the problem or sickness, he did. He liked to come into my bedroom at night. I learned how to 'fight' him.
I was in and out of the hospital because I always had problems with stomache ulcers. I was too young to have them. I just learned how to 'cope' with them.
I did so much to be 'normal.' My normal. If it even existed. I didn't know. I know I faught for it. I've been 'fighting' all of my life. I guess for something that either is there or isn't. And I don't know if i'll ever really know. I just know I'm 'fighting' for it.
I don't know what it feels like to be 'normal.' Only my kind. And I still fight for it. This comes to me as nothing more than just living my life. What's it like to 'not' fight? I wouldn't know the answer to that one.
Fighting is an instinct to me because thats just the way I grew up. I know nothing more or even less. Since 1994, I've been going through tests to see if I had multiple sclerosis. Thats how everything else was found thats 'wrong' with my body. I'm grateful to a few doctors that has helped in finding these. Then last March it was found. And I'm still fighting the pains from it. Very different than the fibromyalgia.
At first, it's not very easy to tell whats what, and whys.
I've been living this way for years and writing about what I do go through. And I do it the best that I can. Because I want badly to help others so they don't feel alone. I know I did. It didn't take me as long as it did with being diagnosed with fibromyalgia as it's taking with being diagnosed with multiple sclerosis. This one is harder to fight. I try very hard every day to fight it. Maybe I should and maybe I shouldn't. But what I know is to fight. And fighting it is hard. Because I found that I can't do it. Not because I'm weak, but because my body already knows that the multiple sclerosis has won over that part of me. The vessle that my soul lives in. I'm not saying that I'm going to just lay down amd not fight, I'm saying that it takes longer for me.
The other things that I also have and fight everyday are irrelivent to this. They do hurt me and gives me much pain as well, but not at all or even close to what the multiple sclerosis and fibromyalgia does. Not close at all. I have my own 'pain chart' now. When I'm asked what would I say that my pain is today, I tell them, "On my pain chart,it's ___." The 'normal' pain chart got thrown out the window years ago.
This morning I woke up and my body doesn't feel so good. It's stiff and hard to walk. Now, my soul is doing great. No problems there. Thats also a fight, my body and my soul. I never know from day to day, which one is going to win. My body and my soul are not on the same page. It's pretty rare if they ever are.
I don't mean to do nothing but to write 'negative' things all the time. To me, it's not. To me, I'm only writing about my days, my life as the way it is. And to me, it's no different then if someone writes about 'horses' everyday. And I'm really not sure when I write, if I am being negative or not, to all of you who read this.
This is my life fighting. To me, it's just that simple.
And now, that brings me to this; I've lost readers because of my 'fight' in my life. And why? It just shows me that the people that said they'd "be here" for me isn't. And thats alright. Who wants to read about someone that has illnesess?
I understand.
My point to this is, I've fought almost all of my life to just live. Instead of existing.
How I see this right now is that I'm going to be fighting this for awhile. Yes, when you get bad news from your doctor, it's not easy to swollow at times. And no one can say that it is. It may take awhile, but I bounce back. I need to 'give me' some time to grieve. I think everyone should do that.
I'm still going through this "funk" for over a year now knowing that I do have MS. I think it's normal and human nature to do so.
In the end...the body and the soul are always going to fight.
I do wish that everyone has a great 'hump' day!

Thank you Connie for the beautiful tag! :o)


 


 



14 comments:

prementity said...

Your entry is so touching it brought tears.  You have been through too much for such a young woman.  Over Easter I learned my daughters best friend has just been diagnosed with fibromyalgia.  They thought she had multiple schlerosis first.
She is barely into her 40's and is suffering much pain.  Her life has been packed with violence and tragedy...too much.  She is raising a daughter of her brother's who is in prison for jail.  Another brother was killed by police.  Another molested her young daughter and she reported him herself.  Maybe this disease can be associated with years of nerves on edge.  I hope you can find happiness a day at a time and grow stronger.  Keep on fighting and don't worry about 'offending' your readers.  If you can live with it, we can read about it!  Our thoughts are with you.
I am Gerry's sister Ann. (gehi6)

chat2missie said...

Have a good day!  Sending you a hug!
Missie

heavenlybama said...

Lisa.....you haven't lost me.  I'm still here.  In February, I was diagnosed with Fibro, mono, and chronic fatigue syndrome so I've been sleeping ALOT because of the mono.  I had repeat blood work done a couple weeks ago and the mono is till active.  My #'s have gone down a little bit.  You know my other medical probs.  In the time I was awake for awhile, I spent yesterday reading your entries since 3/8 to catch up.  That's hard far behind I was.  It's very difficult for me to keep up with journal alerts these days plus I have 3 journals of my own with periodic & sparse entries.  The mono & CFS has kicked my butt the last 3 mos.  I'm getting better slowly (mono).  So if I'm not here everyday, now you know why.  But when I'm up to it, I do catch up on your entries.  Praying for you girlfriend!
Hugs,
Dana

queeniemart said...

there are MANY MANY MANY reasons why people do not comment in a journal.....many want comments from those who they comment to, no matter what. A give and take thing. Sometimes people can not be as open as others and have no comment and some like to lurk. You never quite know what is really going on with others.
I hope your pain subsides today and you are able to enjoy your Weds.
Love,lj

hugsdoodlewacky said...

((((((((((((((((LISA))))))))))))))))I am sorry you are going through so much pain.I wish I can take it all away,so you can be normal and be with your family,your Grandson.I may not always comment,but,I do read your entrys,maybe not the Fwds,cause,I dont like to read them.But I do read your entrys and try to comment.I pray you have a pain free day today and always.

katie39041 said...

what a lovely entry you have wrote, You have been through so much in the past. Other people that are suffering illnesses come here to read what you go through daily hourly, by the minute. You help so many by writing about yourself, you helped me and for that i will be eternerly grateful, thank you.
love and hugs
katie

gehi6 said...

You re one of a kind, Lisa, and if I want to read about courage and a never say die spirit literally I come and read your journal.  A testimony to what the human spirit can endure when strong enough to want to live as long as possible.  Gerry

pharmolo said...

I've said before, Lisa, that I admire your spirit in the face of adversity, although it is a relentless struggle. Keep going.

imgr8phil said...

You keep doing what you feel is best for you an if that means you will continue to fight than do it.  Don't let anyone tell you not to.  That is one thing you control Lisa, your mind and what you are or aren't going to do.  Take care and hope you have a better Thursday.

Phil

cuteallison1980 said...

It breaks my heart to know all that you have been through, but you should always be proud of yourself being such a good fighter.  I'm glad you still have that fight on tag on your journal.  That is very befitting you Lisa.  Stay strong, do the best you can and no one can take anything away from you ever.  Hope you have a happy tomorrow. Luv ya!

Allison

texastames35 said...

thanks a bunch  lisa , i know u dont feel like  writing and sharing your day with us , but ti have family thats my doulbe cuison that has what you have ,o you it helps and let you keep in touch with your family and friends , you have many friends and family that cares and loves you very much , i at times dont really know what to say , or do , i do know that you go thur more then most and its a thing that they are doing reseach on and just maybe some time soon real son they will have something that will help and work and plp will understand this more , . reseach is a great thing it just takes a while plus things , thiers hope and god does hear your prayers and he there with you , blessings to all , lisa i feel close to u and i feel that my reading your joural it has helped me to understand more and that i have learned and i feel that thiers help on its way , your a wonderful person and friend , and your loved and i feel that you will beat this and soon god will heal you and send his angels to watch over you and your family , and friends , many daily prayers and big hugs , tc of you , keep fighting and keep writing even if it s a small note moist of us understand , i just like reading your notes and writing to u , your not along , we are there with you , love you lisa , thanks a lot , hugs prayers ,

ndnhunny30 said...

Deal with it however you need to hun!! Take as much time as you need it is that simple. It is not for anyone to judge how you cope with your illnesses! I will always keep coming back no matter what you write :)
Love you and hugs, Robyn

lanurseprn said...

Hi Lisa,
I thought of you many times this week. I've been sick, and I did not like what the Doc told me. But, he what he told me wasn't anything like what you deal with on any level. I cannot imagine what it is like to get news of a chronic illness like you have. I also can't imagine what it is like to feel sick each day of your life. My current sickness will go away....but yours won't. And I have a new respect for you.

I think there are a lot of people out there with similar things going on as you and if they can find your journal they will be blessed.
Pam

mairiegelling said...

I recently lost a friend who had suffered with MS for 30 years. That's not meant to get you down or add to your pain, but she was one of the loveliest of women I've ever met despite what she was going through. But she learnt how to cope. And what I think she would say to you is - Your pain is your pain. How you deal with it is down to no-one except you. If writing about it helps - do it. Keep the responses you like - delete the ones you don't. Keep yourself as well as you can - feed your soul with whatever it needs. Know that there are people who care.

God Bless+
Mairie
http://journals.aol.co.uk/mairiegelling/word-in-the-hand/