DX with MS 1 year ago yesterday

[michelleric]

Well, with April comes lots of 1st year anniversary's of sad news for myself. (job loss, death of my mom and DX with MS). Seeing as I am awake and cant sleep, though I would post a "thought" or follow-up.

I saw Neuro 2 days ago, and basically she told me what I already know. I am worse with every visit she has seen me. My "good" leg is starting to change and become weak also. My right arm/hand is weaker. I am stiffer, hard to get up from a chair and walk. Takes me a bit to let my body relax before I start on my way.

All in all, a bit of a depressing visit. I am now scheduled for an MRI, again, in 6 weeks, and then see her that day.  Do most patients see their neuro this often? I asked her that, she hopes to make me a "yearly" visit someday.

She is really trying to help me find the correct treatment that will help my face/scalp/ear pain.  I hope we can find it. She is sure there are new lesions that have visited me, hence the MRI. I asked her if she will be able to see the one(s) that are giving all this awful pain in my face. She said maybe, maybe not. So, what the heck is the point of the MRI anyway?

That is it, just an update from me. Baseball season has already started for my kids, and the 1st game was yesterday.  I am thinking about getting some type of device to help get me to the far fields this year. I don't want to be stuck in the car again if the field is too far. Part of me is truly sad and angry about this, but part of me just wants to be part of my life and not watching from the sideline.  I am willing to do what it takes. (I think, anyway).

So, 42 years and needing a walker? Guess I got over the leg brace, surely I can get used to something else.

After coming home from this horrific wake of my friend's child tonight, I am truly blessed to get up each day and thankful I get to enjoy my life. Trying to work on my attitude.

Thanks for being here, my forum family,

Michelle

[sunnyinthesnow]

mary- i think you just warmed lots of hearts, not just the one you were initially comforting.

michelle- when in doubt, always add tassels. always.

[twopack]

Oh Michelle, you can't get up when you already are!  Your only choice now is to get going.  You can't keep doing this dear.  Could someone in the Lil' Pharma family help you out tonight?  Adequate sleep will make many things appear ever so much better.

You and Dad can have a few tears and then get on with the business of reading the driver's manual on your inherited wheels.  I speak here from experience if you will indulge me.

Our family has a deep burgundy color rollator.  My father used it first so he could remain independent to walk the mall and "people shop" without losing his legs to spinal stenosis.  When he left us for a place of wholeness the rollator came to Ohio where Mom was voted most likely to need it next.  And she was.

I thought she might balk a little at using the hand-me-down from her long ago divorced spouse.  But Mom did what was needed to rehab from a bleed in her brain.  That fancy rollator gave her status and made Mom the envy of her friends.  What can make a person feel like they are getting better at the speed of light than to have hand brakes on your handles?  She did so well that she graduated to a cane with a spring loaded foot on it.  Kind'a like a NikeAir walking stick!  She was thinking of replacing that worn out and squeaky aisle clearer when she got an unexpected call Home.

The rollator hibernated in my attic until I fell on the way into work one day.  It was just months after my knee replacement and the day before Christmas and now I had a broken foot.  I had no sick days to take.  Noobody wanted to work for me over the holidays anyway so they gave me a verbal work-with-walker permit.  

I'm a supervisor and general go-fer and have to cover some ground in a building with ramps.  I put that entire rollator to work - a basket to carry stuff, a seat to rest and socialize, brakes to brace me on the downhill and four-on-the-floor for speed.  I couldn't believe how much better I moved, how much further I could go and how much less worn out I got doing it!  The machine was a miracle.  Of course, I didn't realize at the time that it was also helping MS related mobility issues.

I hung onto my buddy for nearly eight weeks and really did have mixed feelings about bidding it good-bye.  I ended up dragging it along to the Columbus Fairgrounds a few months later where it improved my life again.  

I thought about my parents and even felt as old as them a few times.  But I also used my mind's images of them displaying their courage and desire and tenacity as inspiration to keep going no matter how inadequate it made me feel or how it looked to others.  It may get easier to care less about what the public thinks of us once we join the dinner @ 4pm set and park our wheels in the walker corral -- maybe.  

I just know I've got to...no, I WANT to...get somewhere NOW.  Aids weren't invented to make us look dumb or feel inferior.  They are supposed to make life easier and better.  Tell Dad the kids have the Beatles on Wii and you need the thing to ROCK 'N ROLL!!!!

Carry on and on and on,
Mary

[essdipity]

I hope you've managed some sleep since your last post. I'm so sorry your TN has been so bad, also all the other things that have been piling up on you.

As you already know, we are very much your friends here, and we do understand. Use that walker as a tool to fight back. You're still in the game, that's for sure.

Many hugs to you, dear heart.

ess

[tonyad]

  I am VERY late in posting this (sorry), but wanted you to know that I have you in thought and you are obviously a very strong woman that can not be broken easily.

    Could that face/scalp/ear pain be TN? Sounds like it could. Did she ever mention that?  While I have no poems to send to you or a neat song to sing, Just know that we are all here when you need anything.........
~Tonya

[michelleric]

You are all so wonderful, brought a smile to me.  What wonderful support here from all my forum family. I know this is always the place I can come to for a lift when I am down. Huge hugs to you all...

John, thank you for the lovely poem.  That is beautiful, and I so appreciate you sending it my way. Yes, you did bring some sunshine to my soul. You are a good man :)

JJ. I envision you singing this better than Helen Reddy! Good tune to get stuck in my head. Thanks so much . You are a good woman! SO appreciated.

Ren, Ok, the race is on.  I am meeting my father today, and he is bringing my mothers Rollator to me. He simply cried when I asked him if he still had Moms walker. He is very upset his daughter his turning into his wife. Sad for sure. Think he would have much preferred if I asked for her recipes or china, and not the walker. :(

Mary , Alex and Lu,  So appreciate you all too.  This place is so special here, how lucky am I to have found all of you.

Well, been up all night, again, not a good thing. I have about 2 hours left until I need to get up, perhaps I will try and lay down again and pray that sleep comes.

Thanks again from the bottom of my heart,
Michelle

[supermum_ms]

Hey babe,

I think there is a huge delay some days, i went to bed just before 2am, constantly checking to see if you were still up, all was quiet so asumed you'd finaly found slumber, I hope you didn't feel abandoned, i was here, promise :-(

I actually went to bed, singing this song to you.....

I am women, here me roar
In numbers too big to ignore
and I know too much too go back and pretend
cause i've heard it all before
and i've been down there on the floor
no one's ever gonna keep me down again

Oh yes, I am wise
But it'd wisdom born of pain
Yes, I've paid the price
But look how much i've gained
If i have to, I can do anything
I am strong, STRONG
I am Invincible, INVINCIBLE
I am woman

You can bend but never break me
Cause it only serves to make me
More determined to acheive my final goal
and I come back even stronger
Not a novice any longer
Cause you've deepened the conviction in my soul

Oh yes, I am wise
But it'd wisdom born of pain
Yes, I've paid the price
But look how much i've gained
If i have to, I can do anything
I am strong, STRONG
I am Invincible, INVINCIBLE
I am woman

I am women watch me grow
See me standing toe to toe
As I spread my loving arms across the land
But I'm still an embryo
With a long, long way to go
Until I make my brother understand

Oh yes, I am wise
But it'd wisdom born of pain
Yes, I've paid the price
But look how much i've gained
If i have to, I can do anything
I am strong, STRONG
I am Invincible, INVINCIBLE
I am woman

I am woman
I am Invincible
I am strong
I am woman
I am invincible
I am strong!

I AM WOMAN

{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}

JJ

[rendean]

I'm late to the party but did want to express my empathy and sympathy to you regarding the past year. My "anniversary" of dx is next week and I certainly understand the feelings and emotions that go with that reminder. But , this month so many other sad memories.

Always know you can call me ANYTIME. It's a standing offer.

As for the rollator, mine is great and  I have to had to use yet but time is getting closer every day. I challenge you to a rollator race. The winner gets M&Ms for a year :-).

I do like John's poem and it does fit you in that you may be down but you are NEVER out. I am impressed with all that you have dealt with the past year, yet you come up smiling in the end. Truly a brave and strong woman!

With huge hugs,
Ren

[twopack]

Like helium in a balloon, our pain and grief and sadness will expand to fill the container provided.  You can't compare yourself and what has been happening to you to anyone else's experience.  It benefits no one.

I hope your day ends up better than you imagined as it's quite a nice day to enjoy.  But it sounds like you have a lot planned on a short night's rest.  Once again, I don't know how you young women do it.  I'm fatigued just listening to you.

I don't think this sounds much like the support I mean it to be.  Words are failing me today.  Get yourself a fancy looking rollalator with hand brakes, basket and seat.  You'll have help to get yourself to the field and all the gear you need as well.  Aids have nothing to do with age - but you know that already I'm sure.  Just get out there and enjoy your kids.  They'll love having you close.

Mary

[johnniebear]

I'm at loss for words for you.  Just letting you know people do care & some how I  hope that helps  a little may it bring some sunshine to your soul,  here's a poem for you.


      A special toast for women who refuse to be down

Here’s to the women who stand up tall,
to the ones who fight and refuse to fall.
The ones that won’t accept defeat,
no matter how depressed or beat

Here’s to the women size twenty or eight,
and to the older ones that still look great.
To the fair of skin or a flawless tan,
to the ones that flirt like would a man

Here’s to the women who just don’t care,
about their looks or what they wear.
because there beauty is elsewhere.

Here’s to the women who will not cower,
when faced with threat or those in power.
To the young, the old, the big, the small,
and the ones who stand each time they fall.

Here’s to the women who just won’t quit,
and those that shout or throw a fit.
To the sweeter ones that wont attack,
but will find a way to pay you back.

Here’s to you all, I raise my glass,
to the women out there no matter your class.
Drink to yourselves and shout out aloud
You should say very  loud
   “I’m a strong special woman and of that I am proud!”



John..

[HVAC]

It is a year for me as well.  I did not realize it until you mentioned it. I sunk to the bottom then got really afraid this week. Now I am ready to reinvent myself.

[Lulu54]

Dear Michelle,
You know my number, so use it if you want to or need to anytime  today.  I'm around looking for more reasons to not clean my house.

There is so much in your short post - mom, progression, death, the boys, acceptance  - it sure is a mixed bag, isn't it? I wish I had been awake in the middle of the night to join you in a chat.

Hang in there today and tomorrow and the next! - there are no words to offer that can possibly help when a child is lost.   Keep holding warm memories of your mother close to your heart.  Deal with the MS as needed, but don't forget there is a whole lot more to Michelle than this dam n disease. Take it all one bit at a time.

lots of hugs always but especially today,
Laura

[michelleric]

Supermum:

would love to chat.  We need a chat forum here, do they have that? I was thinking about a walker to get me from point A to point B, when I need it. Thanks for your comment.

Udkas:

thanks also.I am sorry about your brother and am inspired by his ability to overcome and get on with his life. That is such a positive thing. I am not depressed right now, just sad. Which is life at times I know.

I am going to a friends baby boys baptism this morning, and then to our friends son's funeral this afternoon. Sure the 2 ends of the spectrum. Life is what it is called.

Just going to try my best to get through this day. I am drained and exhausted. Also have my sons baseball game in the late afternoon. I am going to see if I can get him to go with another family, I don't think I will have it in me at that point the energy to drive him there. My hubby is on call today, and wont be able to attend anything, except for the funeral which he has someone to cover for him

Gonna be a long one...

Thanks again to you both,
Hugs,
Michelle

[Udkas]

To Michelle,

sounds like last year was not the greatest year in your life!  You had a lot to deal with and a lot of adjustments to make.  Life can be tough and hey it's okay to feel like it's unfair, angry or sad for what you have lost, most people grieve the loss of what they can't do anymore, it's normal to have some anger or frustration about this and to feel a bit depressed or even a lot, I guess if you go to the doctors and you know you are getting worse it is a scary, sad feeling.  It sounds like you have a good neurologist though who is caring and trying to help with your issues.  If depression takes over do seek help and discuss this with your doctor.

MS is worse than other diseases for people to adjust to because they are constantly having to adjust, they think they have come to terms with their new symptoms/disability and then something else happens for them to deal with, of cause this is scary, and nobody can predict the outcome, so it's like a roller coaster ride with real fear, ups and downs.

My brother was in a really bad accident that left him a quadriplegic many years ago and he always said to me that he could waste time being angry or sad but it wouldn't change anything so he would focus on the upside of things, he could not longer work but he got to see his two boys more than most dads would, he went to parent help and found things he could do, he has use of one arm, he took painting classes and learnt to paint, infact he obviously had hidden talent, he now works again in an office job at a computer.  He said life was so fast before his accident he sometimes didn't have time to smell the roses and he was grateful as some people don't get a second chance to smell the roses.  ( I think I know what he meant)..

Oh and he got a cool scooter so he could keep up with his kids, its not how you get there, you are there, that's what matters.

I kept changing what I put in this post, as I tend to think too much and type too much, but you have obviously had a very sad and hard day, I admire you for wanting to change your attitude but honestly I don't blame you having some, I hope they can help with your pain, that in itself is hard to deal with. Sorry if I have waffled and I hope it didn't matter that I talked about my brother, I know that's not you, he has inspired me, he is much braver than I.  I hope you get over the field, even if you have to fly in on a helicopter...lol,
just wanted to say I care, thinking of you, I hope that this anniversary can mark the start of a new and better year.

Lots of hugs
Udkas.

[supermum_ms]

Hey babe, do you need to chat, its only 7pm here so i'm all yours if you need someone?

Youve had a bad year and i'm sure today has not been good either, what a sad thing to loose a child, makes you think about life, how we measure up etc try not to carry that weight for too long, your a good person!

What type of thing are you thinking about to get you over to the far field?

Cheers........JJ