View Full Version : HI SUZIE !!!!

06-19-2006, 12:54 PM
HI SUZ....

Remember me?? I was helping you out as a moderator about a year or so back??!?!?!?!

Well HOW ARE YOU?????

I am doing fair to well.....as usual the LUPUS makes life miserable in the summer, but to make it worse my broken back and neck have continued to cause me severe pain to the point that they wanted to implant a morphine pump.
That got shot down by my rheumotologist and myself.

They said due to the LUPUS my body would surely reject the pump and the chance of infection would be to high and I said NO because I do NOT want to be taking MORPHINE on a daily basis.

Sadly I went from walking with a cane to now I must use a walker and my spine continues to detiorate.....but that does not keep me from making the best of each day!!!!

If there is one thing I have learned between my spinal problems, the Lupus and having already survived Liver Cancer is that you better get off the PITY POT and enjoy each day as it may be your last.

It may sound tough but the truth be told we beat oursleves up more than the disease does sometimes....and I found if I try to not allow it to control me it WON'T !!!!!

WELL I have missed you and hope that now that I'll be around I can help you with the MALE questions and different side affects we have vs females.

JAMES :wink:

06-20-2006, 12:06 PM
James!!!!! OMG!
I have thought about you so often and wondered how you were. I was sad when you had to leave due to your health. I am happy to hear that you are not letting Lupus control you. Yes, it is very, very important to value each and every day that GOD has given us..to make sure that each moment is given your attention as a precious moment that will not come again. Along with that, it is equally important to value and treasure those people in our lives who are important and who value us.
You were sorely and truly missed and we all welcome you perspective from a man's point of view. I am sorry to hear that your neck and your back are continuing to deteriorate. I wish that I had the perfect words to say to you, but just know that you are (and have been) in my thoughts and my prayers.
It is sooooooo good to have you back, I look forward to your posts and your participation.

Peace and Blessings

06-21-2006, 05:23 AM
You're such a sweetheart !!

It's nice to be healthy enough to be able to enjoy coming to the websites and helping others and getting my mind of myself.

I told Conrad that I wanted to come back here and he re-actvated my account.....I also told him I would be happy to help you out Moderating ONLY OF YOU need the help and wanted me back in that position.
( that decesion is totally yours)

Having someone to look over the board should you want to take a few days off, or just get away for awhile.

If I can be of help to you I would certainly be honored to take on those responsibilities again as a moderator...BUT ONLY IF YOU WANT ME TO !!!

This is YOUR site and one that I always know is here to help those with LUPUS, but it is here due to your wanting others to get the help they need, and also and most important you do this in memory of your ANGEL Laurie.
What an HONORABLE AND COMPASSIONATE thing you do here. :wink:

Most people would want to get as far away from Lupus as possible after having to deal with such a HUGE loss in their life, but not you, and

For you to heal,you had to continue that fight so other families do not have to go through all you did and that in itself is such a compassionate and UN-SELFISH move to continue to deal with this incedious disease as a way to help HEAL yourself....
I am POSOTIVE that your ANGEL LAURIE is SO PROUD of her MOM for reaching out to others like me who continue to suffer....well it's just such an admirable thing to do and a brave thing as well.

What most of us afflicted with Lupus do not realize is that our family members go through almost as much anguish and pain as we who are afflicted with this nasty disease are.

SO we who are sick must step back once in awhile and look at all the STRESS and pain our wives,husbands, children, boy or girlfriends, mother and father go through.

I sometimes wonder how would I deal with the fact IF my wife had this disgusting disease.
I can only hope that GOD woud grant me the strength that YOU have shown and that my wife has shown over the years watching me when I get relapses and am in pain or just feeling terrible.

All of us who are afflicted with this disease should for one day go outside and maybe just pick a beautifull bouquet of flowers, or write them a pesonal letter and let them know that we DO recognise and sincerly appreciate ALL the things they do to make our lives just a bit more comfortable, put a smile on our faces, all the while when I know you are just as hurt and are crying insdie.
This will not only make our special person in our lives feel so good about what they are doing ,but it will make US feel better just to focus on someone other than ourselves for a day and try to make someone else's day a HAPPY one.

Without people like YOU SUZ....people like me would not only be sick but we would be so miserable and isolated.
SO from me to you and to my wife and all the other significant others who help to TRY and make our lives a little more normal ......I THANK YOU !!!!! WE ALL THANK YOU !!!!

St James 8)

06-21-2006, 10:49 AM
Those were the kindest words that I have heard in a very, very long time. I do hope that my angel is pleased with what I am trying to do. I only wish that I could have done more for her.................
Our site was down for a couple of months and I was so lost without it. It has become a part of me and dear, dear Conrad did everything in his power to get this site back up and running (I guess he could see how lost I was). My days were actually empty and unfullfilled without this site (lol)
You are so right about stepping back and looking outside of ourselves, we all need to do that from time to time.
I would be HONORED to have you as a moderator once again. Your compassion, knowledge and kindness were sorely missed. I read your response regarding disability and it was exceptionally thorough and informative..Thank You Thank You for providing so much worthwile information!!!
I am happy you are here! Thank You for wanting to participate and especially for wanting to Moderate!!
And, thank you again for those kind words...I cried because I don't often get that kind of appreciation :lol:

06-21-2006, 12:50 PM
I am SOOOOOO happy to have brought a smile to your face. ALl you do for all these sick people....is so admirable !!!!!! :wink:

I'm so happy I was able to make you HAPPY and put a SMILE back on your face !!!!!!!

Just promise me one thing...you will NEVER question wether or not you did all you could for you lovely daughter ever again !!!!!!
You know you did more than most people could, and what you did most for her was to bring her up to be a respectfull young lady and to believe in her life after this one.

She is SOOOOO PROUD of you and what you are doing for people like me and all the others who come here for comfort, a shoulder, and an answer now and then.

You made it possible to face this disease with the heart of a fighter and when the fight was lost you also taught her how to be ready to move on and that it was ok to let go.....which had to be so hard for you, but

I am so HAPPY that my presence hear makes you feel good and that you never forgot about me.
I am also honored that you had Conrad make me a moderator again....as you have been my strength many times, now we can lean on each other once again.

It was my pleasure to be able to help the person with the Disability question......I have found that the more I stop thinking about my problems and help others who all this is new to the better off I am.




06-22-2006, 02:14 PM

Are ya OK today?????

I hope you;re just taking a day off to rest....you deserve it !!!!


St James :wink:

06-23-2006, 08:51 AM
Hi James:
Actually, my computer CRASHED!!!!! I had to rush it to the shop for repairs (to the tune of $300.00). A new mother board (uggh) and virus sweep (ouch)
I am doing well, very happy that you were here to fill in for me yesterday.
Thank You So Much!!
I will try very hard to take your advice :lol: I promise I will try!! In the meantime, you and I will do all we can for our family here which, as you have said, does work wonders for us as well!!
Please know that your kind words do make my day and I am able to smile.
Peace and Blessings
Saysusie :lol:

06-24-2006, 07:55 AM

AT least you were able to get it fixed so quickly and get it back up!!!!

I'm so glad to here you feeling a bit more UP and your spirits are exceptionally HIGH !!!!! EXCELLENT !!!!

WE both know that when we feel better in our hearts and minds our bodies feel better as well.

I hope your day is a BEAUTIFULL ONE.....and I'll bet if you go outside and look in your GARDEN somewhere is a GORGEOUS FLOWER there with your name on it !!!!!!
MAY I suggest you go outside and find that FLOWER for it will bring you smiles and joy for the rest of the weekend !!!!

KEEP ON SMILING it's to easy to frown !!!! :)

St James 8)

06-24-2006, 10:57 AM
I didn't find a flower, but I found something even better!! I opened up my car to get something out of it and there were TWO lady bugs on my steering wheel. I got so excited, I had to call my husband to come and look at the ladybugs in my car, he took a picture of them for me......
oh, you probably are wondering why that is so important to me. My daughter's pet name was Ladybug, we rarely called her Lauri - it was always LADYBUG!!
So, yesterday was a truly great day for me :P :P :P

Hope you are feeling well and that you are getting some relief from your pain. I wish you a day filled with joy just like the one I had :D

Peace and Blessings

06-24-2006, 05:02 PM

Did ya ever see the movie CROOKLYN by Spike Lee????

In the movie they live in the Ghetto and it's a family of 4 boys and 1 girl....well the Mother dies of cancer in the movie but she too called her daughter LADYBUG !!!!!

If ya get a chance rent the movie....I know what you;re thinking I won;t like a Spkie Lee joint....but trust me THIS MOVIE IS EXCELLENT !!!!!

I wish I lived in CALI as today we are getting close to 5 inches of rain and the weather has my body feelinglike the TIN MAN in the WIZARD OF OZ !!

I'm NOT ONE for pain meds.....BUT I AM TODAY !!!!!
I'm NOT gonna play HERO...
I'm hurting pretty BAD today so it's time to recognize I can NOT get rid of the pain without help so I am gonna have to take my pain meds.

Sorry for not staying to long but I wanted to see if you were ok...I must go lay down.....OWWWWW :cry:

St James 8)

06-26-2006, 03:57 AM
How are you feeling today? No problem about not being able to stay long, I completely understand.

I saw Crooklyn when it was released, I had forgotten that their daughter's nickname was Ladybug :lol: The mother was played by Alfre Woodard right?
I will have to rent it and watch it again. I remember that I enjoyed it.

Take care of yourself, that is your #1 priority!! You are in my thoughts and prayers.

Talk To You Soon
Peace and Blessings

06-28-2006, 12:20 PM
YUP !!! You got the right movie....wasn;t that such a TRUE to life movie???
I was raised in CROOKLYN and then to Manhattan and then to NJ and now in PA.....we had to move here when I became disabeled and I needed someone to be able to come over and take care of me and help my wife out.

Sorry I've been gone.....I'm trying to keep this relapse from getting out of control but my pain level is up froma 5 to an 8+ and as expected it affects all those other MYRIAD of other auto-ummune problems and that of course aggrivates my broken back and neck....

It has NOT been a good few days for me, anmd I HATE taking my pain meds.....but I am not gonna play hero and be in total PAIN and be 100% miserable. I hate it when I feel this way and have to rely on my wife so much to help me get dressed and feed me.

That is the part that is so HARD on MEN ....we feel so emasculated and helpless, and how can somone who survived Viet Nam and all the other things I've been through feel like this over something I KNOW I can not control>????????

Oh well I'll put my hopes on feeling better tomorrow,cause it all has the better of me today !!!!!

Sorry I can;t help out more today, but I must go lay down.


06-29-2006, 12:35 PM
You never need to apologize for not being able to post. One of the things that is most important to me is that each and everyone of us take care of our health. We spend a lot of time telling others to listen to their bodies, rest when they need it and to take their meds, I know that it is sometimes difficult for us to take our own advice. But, your health is a priority and I want you to do whatever is necessary in order to overcome this flare.
You have, so eloquently, educated us about how a man deals with this disease. I can only say, from a woman's point of view, that your wife would rather do nothing else than to help the man who has been there for her, protected her, provided for her and been her solemate. The same pleasures that you derived from doing those things for her, she is getting from doing this for you. As long as you do not allow your feelings of inadequacy to make you irritable or angry, she will have no problem doing any and everything that you need. Is that not what love is all about??
I know that, as a man, you took an oath to protect and provide for her. But, believe me..what is more important to her is that you are there to love, respect and care about her and her feelings. She has NO PROBLEM whatsoever with the fact that you are now ill and unable to do those things that YOU feel are important for you to do.
Let her help you, accept it lovingly and graciously and know that, in doing so and in loving, respecting and caring for her, that you ARE INDEED giving her everything that she needs!
Take very good care of yourself and join us again when you are feeling better. In the meantime, I will pray for your successful conquest of this current flare!

Peace and Blessings

06-30-2006, 09:52 AM
SUZ....you're such a sweetheart :wink:

My wife is an angel and I am one of those guys who DID go through alot because I WAS a HEAVY CONSTRUCTION ELECTRICIAN, though usually a foreman I still did my days in the trench's and part of that job is what destroyed my neck and back.

I had a VERY hard time not being able to mow my lawn and take care of my 2 1/2 acres of tons of landscaping that includes natural looking walls built from boulders, and a part of that even looks like water is coming from a pile of boulders and returning water back ino the pool which is surrounded by over 1,000 flowers....it truely is beautifull.

I rebuilt this house , every wall,floor, every celing.
It was an 1800's STONE FARM HOUSE and I had to re-do all the stone and re-build not only the house but the barn and all and I had to do it by HISTORICAL Standards so we can be classified as an Historical House.

I had my first heart attack just after I finished the interior and was doing the roof....thank GOD someone grabbed me , as I blacked out I dang near fell of a third story roof.....and a slate one at that.

I had JUST finished when I was diagnosed with the liver cancer and we thought THAT this is a death sentence and I somehow made it, probably because I never really drank liquor.

But what KILLS me even today is my inability to do 1/100th of what I used to do.....no more building Motorcycle's or riding them cross country.
Due to my back and neck I can't mow the lawn...
BUT I do ALL I can in the house to make my wife's life easier....
I do the clothes, clean the house, go food shopping when I can and ALWAYS be sure to pick THREE fresh vases of flower's, one for the DINING ROOM TABLE, one for her BATHROOM, and one for our bedrooom..and if there are extra flowers in bloom one to put on my table next to my lounge chair.....ahhh there;s nothing like the smell of fresh flowers all through the house...

Today though my pain levels are still hovering around the HIGH 7 level I have put it out of my mind and am trying to get my head adjusted so we can enjoy the weekend.

That's the ONE good thing that I know I can count on.....MY BRAIN...it took some training but to be able to hypnotize one self is the best medecine to not have to take DRUGS....but the higher the pain the less it will work.

I'll be fine this isn't the first or the last time my body will go through all this.....hey at least it's not a LUPUS FLAIR UP !!!!!
Though the DISCOID LUPUS is reacing havouc on my hands.....
I MUST remember to wear my gloves or put on sun block when I go out !!!!!

OH well que sera sera