Tuesday, March 18, 2008

My neurologist appointment/and my legs and feet....

.....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!......



Good morning. I'm going to do my best to explain my appointment that I had with my neurologist, and my legs and feet. Bare with me.
I haven't seen him for a few months now. It takes about an hour to an hour and a half to get there. It's worth every mile. When he came into the little room, he always shakes my hand and sits down and then we talk. He will stay in the room and talk with/to you if you need to. Yesterday when he came in the room, he shook my hand and my moms like always. As he sat down, I noticed that his eyes were all red and it looked like he had a large hive on his forhead. In my opinion, it looked like a bad reaction from something. He did apoligize for rubbing his eye, etc...
This was an important visit for me. The last time I seen him, he told me that he was going to raise the Lyrica and put me on a MS medicine. He did raise my Lyrica to 3 times a day instead of 2. Now he didn't put me on an MS medicine.

My bubble was popped! I was really excited and couldn't wait for this to happen. The reason he wasn't putting me on anything right now is because of the CHF. He said that having that will alter 'any' medications. Bummer.
He wants me to take this one test on Friday to see how fast my brain recognizes pain and such. I'm to be down there at 9:00 am. on Friday. He then said another MRI. You know, I'm really getting so tired of the MRI's. I know they will show the lesions so he knows where and what to do. If you only really knew how much I hate taking more tests when they have been the same ones, and really, it doesn't even matter anymore. I'm tired. You know when I write about me being at least 1 to 2 months ahead of him? What that means is when he diagnosed me last March, he told me how he thought my body would progress. And I've been doing my best to prove him wrong! :o)~ I like a challange! Well...I'm there. I'm actually at the place he said I would be. I'm mad about that. I've been working hard and overtime just to prove him WRONG!!! I'm sorry, I guess I'm going to cry about it for the first time now! I so hate this! I don't want him to be close to being right! :o(  All of you know how much I've been fighting my body. My strength is going away. Oh...and no, just because I 'know' about this has NOT affected the way I am in any way. Only to give me a challange to fight against.

Ok....a bit better now. When he told me that he wasn't putting me on any MS medicines, he also mentioned something about me being in a nursing home. :o(  I will get cared for. After my mom and I heard that....we both kind of stopped listening. He did tell me by the end of last year I'd be in my wheelchair because of how fast this has progressed. My legs. I actually should be in it a lot more than I am. And told me by the begining of this year, in the first few months, I'll be in a home. At that time that he told me this stuff, I deffinitly never seen it that way. Plus, I've been fighting it. I'm not sure if thats good or bad. But I'm only 1 month behind what he told me. I was 2 until this last relapes hit me. He was glad to hear that I was on oxygen. And he is also pleased with the medicines I'm taking.
Overall, my appointment went ok. Just things I DO NOT want to hear!!! This is just a piece of my life. I don't have to like it. Just live with it.
We didn't get home until late in the afternoon. There were 2 accidents on the highway. When I was getting out of my clothes to put on something more comfortable, my ankles were swelling. Again, they had this 'pocket' look. I showed my mom and told her that they will fill out, and they did. Thats why I took the pictures.
I'm very sorry that this is so long. I guess I had more things to say this morning. And all I keep saying and thinking is, "I'm only 44!" And I do know that things can hit anyone at anytime. Believe me, my heart goes out to you.
Wrapping this up now. I'm swelling agiain and the CHF is for now, preventing me to have MS medicines.
I pray that all of you have a great and safe day. God bless all of you.


"If you live to be 100, I hope I live to be 100 minus 1 day, so I never have to live without you."
~~Winnie the Pooh


 



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13 comments:

Anonymous said...

wow..don't know what to really say to this entry except i am sorry that this sin happening to you..and that sounds lame even to me...:-(
Lyn
http://journals.aol.com/ukgal36/Britsblog/

Anonymous said...

The graphic you printed about the saying of the Indian Chief Joseph struck me in my heart.  You have explained your doctor visit so well and where you are at.  You have done a magnificent job of taking us with you on a journey where we have not been before.  You are a trail breaker, Lisa, at 44, you are a very brave trail breaker. Marking the trail for us.  God bless your magnificent courage.  And give you the strength to go toward the light.  We all love you.  And admire you so much.  Gerry

Anonymous said...

If you are still coping at home, Lisa, and you don't want to go into a home, you don't have to. It's not easy, but you want to be independent - good on you. There is little you can do about the progression of the disease, something you can do little about. They need those scans to keep track of things. However, willpower can go a long way towards keeping a normal life for as long as possible.

Anonymous said...

I can only echo Gerry and Guido..you are so strong,much more than I could be.....

BIG HUGS
connie

Anonymous said...

(((((((Lisa)))))))))) I wish none of this was happening to you. I say a prayer for you everynight before I go to sleep. I hope you get to take the MS meds soon. I know how much you are looking forward to finally getting them. Give that handsome grandson of yours a big hug for me.
Love,
Cindy xoxo

Anonymous said...

I know you hate the tests...but the Doc needs them to see how the MS is progressing. I'm sorry he couldn't put you on MS meds. Maybe as your CHF settles down maybe in time he can.
Scary stuff you are dealing with. I am keeping you in my prayers.
Pam

Anonymous said...

All like who care about you, we wish you weren't having to go through all of the health troubles you have dear, just keep your positive attitude and know we are all here for you.  Bless you. Arlene (AJ)

Anonymous said...

(((((((((((LISA)))))))))))))))))))))))))Just know,Ii care and am always praying.

Anonymous said...

you must get so frustrated

Anonymous said...

So much is happening and so fast too.  My thoughts and prayers are with you always.  Take care.

Phil

Anonymous said...

It hurts me to see you this way.  I wish I could give you all the wonderful words of encouragement that would make a difference in your life.  You are going through so many tough physical problems and I feel for you.  I thank my blessing that I am healthy and happy.  There is always hope that tomorrow will be a better day.  Luv ya!

Allison

Anonymous said...

LISA I LOVE YOU AND TO LET YOU KNOW IM HERE AND WERE PRAYING , THANKS FOR THE PICTURES THIER GREAT THATS ONE GREAT GRANDSON YOU HAVE THERE , IM GLADED YOU BOTH HAVE HIM , AND HE GAVES YOU ALL SO MUCH LOVE AND FAITH , ITS NICE TO SEE PAPA TOO , NICE SMILE AND PICTURE , YW TY , GOD LOVES YOU SO DO WE , KEP TRYING AND REBMBER WERE ALL SUPPORING YOU ALL AND WISHING FOR THE BEST , MANY DAILY PRAYERS , BIG BIG HUGS AND KISSES , ITS HARD AND YOU HAVE LOTS OF FEELINGS AND MOODS , BUT YOU WILL MAKE IT THUR AND YOU HAVE GODS BLESSINGS , AND OURS , HAND IN HAND , THANKS FOR EVERYTHING HAPPY EVERYTHING , BIG BIG HUGS , GOD WATCH OVER US ALL , MAY YOU HEAL , AND RESTORE US TO YOUR GLORY , THANK YOU GOD , POUR YOUR SPIRT DOWN , OPEN ANY DOORS THAT YOU MAY WANT US TO GO THUR WE BELIVE THAT YOU HAVE US IN YOUR HANDS AND THAT YOU LOVE US , BLESS YOUR CHILDEN AND MAKE US WHOLE , , WE LOVE YOU GOD AND JESUS , . WE ARE SENDING PRAYERS AND LOVE TO YOU ALL , FAITH LOVE AND HOPE , ANGELS ARE THERE , TC OF U ALL , GET SOME REST WE MISS YOU , LOVE YOU ALL PEACEE WE LEVE YOU , THANKS A BUNCH EVERYONE , YOUR NOT ALONG  , DESTINY

Anonymous said...

Hi Lisa, I lost contact with your journal, unfortunately, I am so glad I found it again.  So very sorry to hear you are going through so very much.  My prayers and thoughts are with you.  My doctor has been at me for months to try Lyrica, as I have very bad side effects with medications I put it off.  I get injections once a week but they are not helping much anymore, so I am trying the Lyrica now been on it one week it is not too bad compared to most meds.  Very sorry to hear you have been diagnosed with MS and CHF.  Your pictures and journal are beautiful, I love looking at all the beautiful things you put in it.  God bless.