A Lighthearted Question.....

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A Lighthearted Question.....

Post by Jenny on Fri Mar 13, 2009 4:26 pm

Who picks us to have all of this cr*p anyway????

Guess it's the 'Why Me' part of a newly diagnosed cycle..... (Fibro recently) Sad Sad
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Re: A Lighthearted Question.....

Post by socalmonica on Fri Mar 13, 2009 6:00 pm

You know, that is a good question. I have asked that myself and I have gone through that when my toddler was diagnosed with type 1 diabetes. I always come back and tell myself that God doesn't give me more than I can handle and that maybe my experiences can help other people in their time of need. That's the only thing that gets me through it sometimes. If I can help others out and something good comes out of it, then I feel like I am achieving something. Hope that helps.

Monica

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Re: A Lighthearted Question.....

Post by Jenny on Fri Mar 13, 2009 6:13 pm

Thats a valid point but sometimes, I feel as though I have been handed far more than enough....... I would like a break occasionally and to have things go right for a change. It has been well over 10 years that I have been doing what is thought to be an amount I can handle...... It hasn't only been my own medical stuff, my parents, stuff with the kids etc etc etc..... I am sure you know how it goes.... Neutral Neutral No
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Re: A Lighthearted Question.....

Post by socalmonica on Fri Mar 13, 2009 7:42 pm

I know. I feel the same way. I have to deal with a lot with my son, not only is he diabetic, he is a brittle diabetic to boot, meaning we cannot find any patterns with him and he is extremely unstable, so we have to check his blood sugar constantly, so I have to check on him every 3-4 hours in the night, which makes it very hard for me having lupus because my husband just doesn't get it even though he tries to, he still leaves it all on my shoulders, which is fine. I'm used to it now. But as far as him and I go, we can't find a babysitter so we can even spend time together because no one can even watch him, except for my mom, who has her hands full too. It really sucks. So trust me, I know what you mean. I just want a weekend away with my husband and not to get up in the middle of the night several times. I think I'd probably end up sleeping the entire weekend. LOL!!! So much for a romantic weekend. I know what you mean girl!!

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Re: A Lighthearted Question.....

Post by Jenny on Sat Mar 14, 2009 12:59 am

You know, this is why places like this one are so VALUABLE. Its only US who knows the drum.....Other people think they know, they do try for us, most of the time but just because we have what we have it gets us down at times, overwhelms us and no-one but others in the SAME position REALLY know.

If I could, I would.......I'd have no problem having a weekend at your place......If I win lotto, I'll be around, OK??!! Very Happy Very Happy

Thanks for the vote of "I know, I REALLY know'.......Means heaps....
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Re: A Lighthearted Question.....

Post by christines555 on Sat Mar 14, 2009 2:56 am

I always felt that if I didn't have bad luck I wouldn't have any luck at all!! Went and saw my PCP yesterday and he thinks I "may" have discoid on top of SLE. A friend recently sent an email that had a list of things to be thankful for: you know, food, clothing, shelter, etc. I agree wholeheartedly. There are lots of people who have their health and have no food, shelter, etc. Then I hear of the little girl who recently had an operation where doctors removed, I believe, 7 of her organs to do the surgery and then put them back. She is fine now. Ayway, no more "why me" for me!

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Re: A Lighthearted Question.....

Post by maidmaz on Sat Mar 14, 2009 4:34 am

Hi Girls,

I was always the one who would do anything for anyone, for example; my Mum has always been an unwell person and relied on me to do a lot for her, I would always comply (which she took advantage of on more than one occassion) to the point that I not only put her and her needs before my own but also before my husband and children! I know longer do this, I now put my own and my families needs before anyone elses! Being dx'd made me realise that I need to slow down, put myself and my family first but most importantly take care of me!

So.....Why me? My body was telling me to slow down and rest, mind you it's really difficult when I am in immense pain and cursing this damned disease with every four letter swear word I can think of lol!

OK that's my bit of philosophy for today Shocked it's done my brain in and I need to go have a nap Sleep

Take Care
Love and Hugs
xxxMaz I love you
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Re: A Lighthearted Question.....

Post by Melody297 on Sat Mar 14, 2009 5:43 pm

I agree with you Maz............when all else fells, and don't know what to do.. A NAP always helps !!!!!!!!!!!!!!!

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Re: A Lighthearted Question.....

Post by Jenny on Sat Mar 14, 2009 11:29 pm

Or a glass of wine....

Rowing regatta....HERE I COME!!!!!
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Re: A Lighthearted Question.....

Post by geoff on Sun Mar 15, 2009 11:04 am

Girls... There is no-way I know exactly what you're all going through as I don't have SLE - but I do understand.

This may seem strange to many... but being diagnosed with cutaneous lupus has been life changing - and in one way, for the better. After meeting so many others who were/are doing it tougher than myself, I finally had a purpose in life. If I didn't have a form of lupus, I wouldn't have met so many wonderful people.

As Always... Geoff
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Re: A Lighthearted Question.....

Post by maidmaz on Mon Mar 16, 2009 3:54 am

Thanks Geoff
-For understanding and also for being on our side! Also for the work you do towards making others aware of our Disease! sunny

Take Care
xxxMaz
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Re: A Lighthearted Question.....

Post by Lupiebin on Sun Apr 05, 2009 5:00 pm

Hello Everyone-I just felt compelled to throw my 2 cents in on this one-coming from a family rich in illness and disease-we have our own ways of dealing with pain and bad news. HUMOR (because if we don't laugh, we cry)
But I wanted to share my idea of why anyone deals with disease, illness, afflictions, pain, depression-anything really:
I truely feel we are "blessed" with our disease as a life lesson. If not for ourselves to learn from, than for someone else. Even given all our stress and tragedies-there is ALWAYS someone else worse off than ourselves.
I had a great aunt and a dear, close sister suffer and die from lupus complications. I was inspired by their strength and endurance (their gift to me to learn from their suffering) It truely helps me go on with my own Lupus and other illnesses and help educate others as much as possible.
Agreed, the pain and all that goes with it (hospitals, doctors, medications) can be extremely trying and many days we wish our lives were pain free and "normal".
But just as a little experiment amoung ourselves-next time you feel so down and desperate with Lupus or any other disease, ask yourself "What am I leanring from this?" (besides IT HURTS! haa haa) or "What am I teaching others through my suffering?" ( in other words, are you helping others cope? Putting life in a better perspective for someone? Educating anyone on how difficult things can be, but we can STILL push through?
I know how difficult it can be-BELIEVE ME I KNOW!-but I do try to be positive in all I do and go through, only because I know it's half my battle-and there's ALWAYS SOMEBODY watching!!
Some believe we choose our own life map before being born-interesting theory-as each reincarnation we may think "ok, I was rich and healthy last time, let's see what poor and sick is like..."
Life lessons? Knowing what it's like to be in another's shoes so to speak? hmmmm
Sending healing hugs to all! Lupiebin
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Re: A Lighthearted Question.....

Post by AbsolutelyFab on Mon Apr 06, 2009 7:48 pm

I guess that what I have learned throughout the last year is that I need to slow down and spend more time with my family. I have always been a Type A personality that could not sit still bounce and was always on the go. No matter what anyone tried, I would not slow down and smell the proverbial roses.

As I am not able to go at this fast pace any longer, I have learned to relax and spend time just being still! Very Happy

Hugs,
Beth
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Re: A Lighthearted Question.....

Post by Poppy on Mon Apr 06, 2009 8:57 pm

Lupiebin:

After much thought and consideration, I feel like you. I feel that in a way - this is/was a blessing. I have learned more in this last year than I have in a while. The knowledge we use and pass on to others is so important.

I, also, have heard that we choose our own life map before being born and I have contemplated why I would choose this life I have this time around - there are good reasons. Some I have acknowledged and others have yet to appear to me. I am a positive person (the majority of the time) and I assume that there are positive reasons for this and everything else that happens in our lives.

Karma is an interesting subject! Best wishes to all. I love you
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Re: A Lighthearted Question.....

Post by geoff on Tue Apr 07, 2009 2:00 pm

Hi Girls (and not forgetting Ray!!)

I suppose with life we never really know what's around the corner - so to speak.

I just hope it's positive for all of you - and try not to stress with the negatives - "Tough times won't last if tough people do!"

(Sure, it's easy to say, but a quite a few thoughts go through your head when you're out there on your own, talking to yourself on a bike all day)

Geoff...
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Re: A Lighthearted Question.....

Post by Jenny on Wed Apr 22, 2009 5:16 pm

Not really sure what I have learned from all of this....except it has changed the lives of my family, my new partner and not to mention, my own. Dreams and expectations don't seem to exist for very long with me. I make a plan or have a dream and something usually happens to put it all on hold or demolish it completely....other than me getting married soon !!! Very Happy Very Happy

I have no ideas on overcoming some of all the 'stuff' other than when someting kicks you over, pick yourself up, dust yourself off and just keep going!!!!
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Re: A Lighthearted Question.....

Post by californiacat on Fri Jun 05, 2009 8:56 am

Hi.....it has been a long time since I have written here........after being consumed w/ my ;upus,fibro,etc. for the past 2 years worse than my entire 23 years living w/ this disease....well, I guess I needed a "break" from writing about it!!!But just saw this thread and wanted to give my 2 cents!!!!!It is nice to see how this site has grown...many thanks to my "sis" Maz!!!!!Anyways....I was Dx 23 years ago and have never felt why me....but I can relate and feel like this is not the path that I would have chosen...and yes, others have it worse,it could be worse,god only gives us what we can handle, etc....but the bottom line is this and all other illnesses are difficult to deal with.....And having an invisible disease is even a bigger challenge in many ways...BUT it is what it is...I am 50,single,no family,live on social security,barely make ends meet,am sick a lot......and I could go on ...but I try to accept my life and diseases,am good to myself,try to always stay grateful for what I do have and do the best I can.I also try to help others in any possible way....even if it is just a phonecall.....I try to get out of myself...but I also honor myself and do not push when I'm not able to.After spending half my life sick and pretty much alone, I have learned what works for me...I am no saint nor perfect and there are times I cry and say "enough already!"But as I said, it is what it is and that is it!!!I know I have blabbed and do not know if this helped anyone but it did me!!!!!You all take care and am sending lottsa hugs...Barbara xox

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Re: A Lighthearted Question.....

Post by yardman417 on Tue Jun 09, 2009 5:36 am

Very Happy Very Happy Very Happy flower flower
Guess who Very Happy
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Re: A Lighthearted Question.....

Post by socalmonica on Tue Jun 09, 2009 6:20 am

Hello Barb!!! So good to hear from you!! I missed you!!!

Monica

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