STILL ALIVE & KICKING & SCREAMING

[ShadowsSister]

Good Morning All ! AND HAPPY FATHERS DAY TO ALL THE DADDIES OUT THERE
It is a better morning, at least I didn't wake up with half my my tummy streaming out my nose, this can be very painful & scary. Lets see were do I start, found out Wednesday that my back has been broken again ( L-2 L3 & L-4) are fractured, and several others have crushed disc. There isn't a whole lot to be done about it, BONE SCAN will be done Thursday afternoon, Glamor shot of the tummy area showed that I am TRUELY FULL of S%#t.... Sorry if I have offended anyone, sure don't mean to. The spasms are now EVERYWHERE But God Bless Dr. Dahi he has upped the pain meds and now the pain is somewhat bearable. I can honestly say the MS has hit everywhere my vision is all over the place but at least I can see.
I am so thankful that all my Dr's care about me and give me the best of themselves, I can also say that about all of you. I KNOW FOR A FACT I'D BE IN A MUCH WORSE PLACE IF YOUR SUPPORT & PRAYERS weren't with me 24/7.
I tried reading some of your posted but my vision so very blurry. I don't want any of you to think or feel that I am not here for you too. I hate that it is so darn difficult to get on the computer more, but I believe this "STUFF" will quiet down, it just takes a while. I am thankful I have been kept out of the hospital that my Dr's realize staying home is best.
NEWS FLASH !The MS can mess with your taste buds.. I am a Coffee lover who has had to switch to tea, which I have never liked, God works in wondrous ways, Dr's had wanted me to try and cut back on my Java which I love black and strong.
I am Praying that each of you will all feel better with each day that passes, that you can feel my love & hugs even when I am off line, I want you to know I carry each of you with me where ever I am.  WHAT A SPECIAL GROUP YOU ARE and I am so blessed to hear & feel your strength and courage in each of your posting. You have no idea of how much you are getting me through this awful time. SO THANKS "ONE MORE" TIME.
I have to stop for now but I promise I stay in touch one way or another. I have to send "our Lulu" a special HUG to say "THANK YOU" !!! for keeping the GROUP up-dated about were I'm at and whats going on. Lulu you are a rock of strength for all of us....
All of you have a day filled with love, laughter, and fewer spasms...{{{~!~}}} DJ

[PastorDan]

Oh, I almost forgot, then I saw Lulu's note in the right column.  THANK YOU for the Father's Day greetings.  It means more than most fathers are able to express.

[PastorDan]

I am in awe of all of you.  God bless each of you tonight, and forever.  You exemplify His love; may He multiply His gifts to you.

[michelleric]

You sure can put it in prospective. Thank you and I will say an extra prayer and good thoughts for you tonight.
Warmly,
Michelle

[meg321]

Its so nice to see you feeling a bit better, i am happy they have been able to help with the pain...You are such a MIRACLE in my opinion, I am not sure I could be as positive as you are if I were in your place.

But I am trying..

I love coffee too but a few months ago I did lose the taste for it..so weird..I still love it and am still trying to drink it.

god bless you, sweetie!!

hugs, meg

[Guitar_grrrl]

DJ, you absolutely rock!  I'm so sorry about your back and pain, and all, but I really had to laugh about the "glamour shot" of your tummy!  I'm glad the pain meds are taking the edge off.

And I'm with you on the Java - like the kid on the movie said, "I like my coffee like I like my men, black and strong!".  I keep it down to about 4 cups a week, now, alternating with  Earl Grey tea.

I keep thinking good thoughts for you, and send you a little white light every morning, as I do for everyone here.

Cheers,
Guitar_grrrl

[Heather3418]

You are my idol, my rock, my inspiration and my spiritual sister.  You are a teacher, DJ.  You teach us that although life is not a bed of roses that we CAN get through the bad times with perseverance and determination if we set our minds to just DO IT.  It's hard to keep going, as you know, when you are in pain every hour of every day.

Although I do suffer from chronic pain, I know that you suffer much more than I do..  It makes my pain more bearable, to know that there is a delightful, beautiful woman, that seems to continue to handle what life throws at her, even though it may pull you down and try to destroy your spirit.  You hit one obstacle after another, but yet, you keep on going.  That's what I learn from you.

Being honest with each other, we both have to admit that there are days that we want to just throw in the towel.  I sometimes think that I cannot bear another day in pain.  Something will come along, like an email from one of my grandchildren, that makes me realize that I have so much to live for.  The h e l l with the pain, I have things that have left to do.  Maybe it's just having an opportunity to see 6 or 7 golden finches on my porch scrambling for a spot at the Thistle Feeder.   What a sight to behold.  So beautiful and so colorful, that you HAVE to know that they were created by a high power; for our enjoyment.

There is beauty all around us, if we can tell our pain, "you cannot stop me now."  I have so many beautiful things to see and experience; I will not let you control my day.  I find happiness is the smallest of things now, where before with the pain and the MS, I never took the time to "smell the roses."

That's what you teach me and teach so many others DJ.  Keep 'kicking and screaming," would you?  If you can do it and still spread sunshine and love, so can I.

I love you dear heart...I really, really mean that.  You are a treasure.  Truly an "angel with invisible wings."  An angel among us..

Big, big, gentle hugs, love and many prayers of hope and endurance.
Heather

[Quixotic1]

And I can here you screaming all the way up here.  What a lovely sound of life and a life well-spent.  Good to hear from you!

NO ONE should ever be shunned or asked to quietly go away.  I am so sorry that happened to you.  You're top dog here and we need to have some fun!

Bummer about the new fractures - another MRI sounds like h*ll.  Do you have extremely brittle bones?  Do they think it is from the lack of movement, steroids or is it familial?

Anyway, I'm glad you are here with us.

Quix

[Lulu54]

Dear forum members,

DJ and I have discussed this repeatedly and I would like to share some thoughts with you here that pertain to her comments above.  

Years ago she was active with her local MS chapter - and then her disease took the ugly course, put her in a wheelchair and she also underwent the tracheotomy to breathe.  The local MS people, in their misguided wisdom, counseled her to go away quietly because she was too scarey for people with MS to encounter. And unfortunately she believed them.

Being the sweet person that she is, she has shielded so many from the horrible problems that affect her daily life. She left that group, and remained alone for too many years, quietly taking on the afflictions without complaining or even being able to talk about them.

It is because of you and the love and support you have shown to DJ that she has slowly disclosed more particulars about what it is like to live in her skin day in and day out.  When she first joined us last year, one comment she made stuck with me more than all the others - she said that she always felt so alone and that she was the only person with the MS symptoms like she has.  

She was in a very lonely spot - with her wonderful family supporting her but no other people with MS.  We all know that our family support is great, but until you live with MS you can't truly relate and understand to all the nuances of this disease.

I have encouraged DJ to share more of her life, so we can all learn from her.  As brutal as the truth can be, I still know that knowledge is power. The most we know, the more prepared we are emotionally and physically to deal with whatever our own MS will bring.  

Few of us will ever progress as far as DJ has, she is truly an example of the extreme course of MS.  But some of us will come close, and many will experience some of the same problems she has encountered.  By sharing her life with us we are gaining knowledge that we can't get any where else.

I am so incredibly proud of this community for embracing DJ and giving her the support that she needs so much and deserves.  May we never shun anyone who comes looking for our help.

I am also proud of DJ's efforts to share more of her life with each and everyone of us.  She is a private person and telling us more of her story is not easy.  It is a journey we can learn from.  


I am filled with much love and admiration for all of you,
Laura/Lulu

[Ufrustrated2]

happy to see you still have the "fight the good fight" with a kick or two in you! LOL

honestly, happy to hear you are in such good care and that the pain is somewhat bearable.

hang tough and thanks for spreading the laughter ...