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Deb Grabetz
Moderator
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Posted: Thu Jul 10th, 2008 22:24 |
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Hi Karon,
Each one of your quotes sends a strong message! Thanks for sharing...! I think I've mentioned this before (well, my daughter tells me I usually repeat everything 4X...do I really??!!)   but a friend gave me "The Two Wolves" in a frame for my birthday. At the time I was struggling with a family member....and it could not have been more perfect or come at a better time! Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Deb Grabetz
Moderator
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Posted: Mon Jul 14th, 2008 11:37 |
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"At times our own light goes out and is rekindled by a spark from another person.
Each of us has cause to think with deep gratitude of those who have lighted the flame within us."
--Albert Schweitzer Last edited on Mon Jul 14th, 2008 11:38 by Deb Grabetz
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
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Posted: Mon Jul 14th, 2008 14:04 |
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I have a friend who is quite tickled that I quote myself. Frankly, I think we are all quotable; we all discover truths and probably have unique ways of expressing it. So here is another of mine.
"Focus on the present because your future is now."
Lately, I've been going through a lot of grieving (partner left because of my disability), and so my mind has been very past focused and egoic. I found that while doing this my days became very long, as I found yet another thought/emotion to distract me in the moment, and so my days were filled with a lot of moments rather than presence. When actually living in the moment, my days are short; they fly by. Of course, time marches on whether a pleasant or unpleasant experience, now focused or past/future focused. All I know is that I experience so much more joy if I stay focused in the present.
How does this relate to the MP? While I sometimes think about my future and know I will begin making some plans at some point, I remember that I am living NOW not when I get well. (I mean, the universe might have other plans for me and meanwhile I've forgotten to enjoy the present moment.) Staying now focused helps me remember that I am not my disability and brings, as I've said, a lot more joy into my life. I've even caught myself lying in bed in all sorts of pain only to have the pain sort of vanish into the background and me reallize that I'm feeling joyful.
Claire
P.S. Another one..."Do more than survive, love life, thrive."
Last edited on Mon Jul 14th, 2008 14:10 by eClaire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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marion villa
Member
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Posted: Mon Jul 14th, 2008 16:21 |
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Think about the good time we will have skiing in Acapulco when this end.
That guy will be with his jaw in the floor, and regretting himsef fo letting away a woman whith such talent and guts...
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol advil, almagato,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 started 20 april 2008, 25D<4ng
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JanEE
Member
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Posted: Tue Jul 15th, 2008 19:25 |
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Claire,
I was looking up something else and ran across this one. You could have written this:
"Now and then it's good to pause in our pursuit of happiness and just be happy"---Apollinaire
You also said, "I am not my disability". That is so true, but at the same time it is what we are experiencing right now, and we can make the choice how we feel about it. It takes such determination, and as you said, focus, to see it through. My determination can sometimes be especially difficult when "well-meaning" but slightly insensitive friends keep saying things like, "How long is this thing going to last?" or "Shouldn't you be feeling great by this time?" or once when I was having a really good day and let it be known---"That's good because I was just going to tell you that I think you need to find a new doctor". Even though I made many attempts in the beginning to visit them and explain the protocol, they have made no attempt to understand why I am sticking with something that is so hard and takes so long. I've had to fight with myself to keep from feeling bitter (part neuro herx?), and to chalk it up to people being busy with their own lives. I've learned to spend a great deal of my time by myself to avoid the remarks and disinterest. It's a good thing I have plenty of interests to keep me occupied at home and most of the time I am happy. It's also a good thing we have these MP sites.
I think we will definitely be different, and stronger, people when we finish with the protocol. I think it will have added a lot to the "real" us. Your taking joy in even the pain is an example. I did the same thing yesterday while spending the entire day in bed. All the pain everywhere was just a sort of a happy reminder of all the bacteria being killed in those areas. It was a bad day. Today is a good one, and yesterday is but a dim memory.
---The timing of this is very strange, but one of these friends just showed up at my door (she wouldn't come in) with an article that is promoting a fibromyalgia support web site. I had a feeling that it would be just the usual, but checked it out anyway, and realized it wasn't an article at all, but an advertisement. It turns out the site is sponsored by Pfizer---who makes Lyrica! They are asking for promises to learn about our disease and take good care of ourselves (little do they know we are taking better care of ourselves than they are recommending), plus our email address, in exchange for their donation of $1 per promise/email-address that will go to (equally divided among 4) organizations involved with helping people with fibromyalgia. I was hoping they would have a place for people to post messages, but there were none---and no forums for discussion.
I hope this post doesn't sound depressing. I didn't mean it that way. My comments just sort of snow-balled. I even let this post sit for a day before sending it. Have a great day. I am---yes, another one.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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Deb Grabetz
Moderator
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Posted: Tue Jul 15th, 2008 20:25 |
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Jan,
Your post was great...and caused me to think a bit about a conversation I had with a friend yesterday.
My friend lost her husband suddenly to a heart attack, two days before Christmas, last year. She mentiond to me that a relative had called (after only six months of her loss) and asked her, "So are things back to normal?" We both realized as we talked about this, that people in our lives want things to be "normal", so THEY can feel better. Sometimes I forget how others suffer silently, with me!  ...and yet many of their actions are very selfish.
My friends life will never be normal, she lost the love of her life at 56 years old, her two sons have lost their father and a brand new baby granddaughter will never remember her Grandpa! Yet, family and friends will watch her just as people watch all of us in recovery, hoping for life to be "normal." Yes, she is moving forward but what makes anyone think that life just falls back into place after such a loss? She will think of her husband each and every day that she lives, even as she moves on....I thought about her all day yesterday...and realized how life can surprise us, in many different ways! ...
...and on that note, Claire, I loved your quote ...
"Do more than survive, love life, thrive."
Last edited on Tue Jul 15th, 2008 20:28 by Deb Grabetz
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
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Posted: Tue Jul 15th, 2008 20:37 |
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JanEE wrote: "Now and then it's good to pause in our pursuit of happiness and just be happy"---Apollinaire
My determination can sometimes be especially difficult when "well-meaning" but slightly insensitive friends keep saying things like, "How long is this thing going to last?" or "Shouldn't you be feeling great by this time?" or once when I was having a really good day and let it be known---"That's good because I was just going to tell you that I think you need to find a new doctor". Even though I made many attempts in the beginning to visit them and explain the protocol, they have made no attempt to understand why I am sticking with something that is so hard and takes so long. I've had to fight with myself to keep from feeling bitter (part neuro herx?), and to chalk it up to people being busy with their own lives. I've learned to spend a great deal of my time by myself to avoid the remarks and disinterest. It's a good thing I have plenty of interests to keep me occupied at home and most of the time I am happy. It's also a good thing we have these MP sites.
Love the quotation! Thanks for saying I could have written it Jan.
I can relate to what you are saying, particularly the highlighted part and although no doubt enhanced by the neuro IP, I think these are real feelings based on our experience (feeling rejected). We don't want people to have proven to be who they are: that is, not open to our experience. (One of my perspectives on this.)
I have been coming to grips with hurt and bitterness and feeling the victim ever since I put out a brief and non-pity party email on my church announcements indicating that I would need some social contact when I started the MP because I was going to become much more isolated, with only my partner (who has since left because of my disability) for contact. I got a virtual no response and this was after most everyone I knew (i.e., people I used to go out to lunch with and dinner with and invite to my home and to parties) behaved as if I was was out of mind because I was out of sight when I first became disabled. That is, I had already successfully adjusted to "friends" quite nearly walking away the first time. With my partner leaving over the same issue (which of course was really not the issue, but people have to wake up in their own time to their own excuses for not finding happiness in the now), my bitterness came to the fore.
Now, I no longer feel as if I have to justify myself to anyone and I've made some contacts with folk who are not blaming me for my illness (or worse yet blaming my choice of treatment as the reason why my partner left) with whom I plan to create a new social network. Realizing what they thought of me didn't reflect onto who I am--my essential self--helped release the bitterness. This does not mean that I will pursue friendship with these old friends. They have shown their stripes and I do not need to invest more energy in folk who would behave this way.
Being able to be happy when alone is a good sign of consciousness!!!
As for this MP site, I think if it were not for the MP friends I made when I got on board, I would not have made it through the last 20 months (or a good part of them). Well, I would have made it, but they made it infinitely softer for me, putting the "kind" back into humankind.
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Deb Grabetz
Moderator
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Posted: Fri Jul 18th, 2008 13:01 |
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You will come to know, that what
appears today to be a sacrifice will prove instead
to be the greatest investment that you will ever make.
Gorden B. Hinkley
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Aunt Diana
Member
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Posted: Fri Jul 18th, 2008 19:15 |
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"In times of change, the learners inherit the world, while the learned find themselves beautifully equipped to deal with a world that no longer exists."
Eric Hoffer
(I may have gotten this off of someone's post on the MP website...I apologize that I don't remember who used this quote but it did fit my thinking at the moment so much that I wrote it in my calendar)Last edited on Fri Jul 18th, 2008 19:17 by Aunt Diana
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, , benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux
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Deb Grabetz
Moderator
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Posted: Wed Jul 23rd, 2008 12:21 |
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Today, I wanted to post a friendship quote. It seemed fitting as we all seem to be nurturing such great online friendships, as we journey through the MP together!
There is no distance too far between friends,
for friendship gives wings to the heart.
Kathy Kay Benudiz
Friendships multiply joys and divide griefs.
H. G. Bohn
A friend hears the song in my heart
and sings it to me when my memory fails
(or in our case, in the middle of a BIG HERX!)
Readers Digest ...
Last edited on Wed Jul 23rd, 2008 12:24 by Deb Grabetz
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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PaulT
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| Location: | Sydney, Australia |
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Posted: Thu Jul 24th, 2008 03:16 |
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The Story of Dr W
This is a true story which I will record here to the best of my knowledge - onl;y the names, diseases and medications have been changed to protect the innocent.
A long time ago Dr W was diagnosed with bananaoidosis, a mysterious disease to which his doctors said don't worry it will go away by itself in a few years. When it didn't go away they gave him medicines like cheezels and potato crisps which helped for a little while but soon it made him feel sick again.
Now Dr W was an electrical engineer and had a doctorate in biomedical engineering and he thought in that analytical way only engineers can. and he said something is making me sick and the drugs they have given me don't work. So Dr W reviewed the research on bananaodosis and found some interesting things, Then one day whilst sitting in the hot tub he put 3+3 together, and as only engineers can shouted Eureka and came up with the answer . . . . . 42 (which of course is the meaning of life, the universe and everything - from hitchhikers guide to the galaxy).
If I take some gummy bears (normally used for blood pressure) and then take some M&Ms (used to fight infection) I will get better and he took the sweets and he did get better.
Dr W told his friends with bananaodosis and they tried his gummy bears and M&M cure and they got better.
Everyone was so excited .
Dr W went to the top bananaodoisis specialists and said " Dr S I have found a CURE for bananaodosis" but Dr S and the others said you are just selling snake oil how can gummy bears and M&Ms cure this disease. The specialists would not consider his work. They said you are not a doctor what would you know.
Dr W's friends were so excited the went to the internet chat rooms (as bananaoidosis patients are very rare the can only meet and communicate with each other by computer) and they told the people there about their discovery. Everyone actually agreed cheezels and crisps were bad but they kept taking them because their doctors told them to.
So Dr W was a bit discouraged but he knew his treatment worked so he set up a website where people could find out about his work and participate in a very large study. He worked with the FDA and got approval for the use of Yellow and Green M&Ms for bannanaoidosis (interestingly chezels are not approved).
And gradually he is convincing people that his work is valid.
Anyway It's time for a Gummy Bear
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Sarcoid diag 1/05 - Cough, fatigue, Feb 07 125D=59.6, Oct 07 25D=12, May 08 25D=7.5 avoid light/D, Noirs, covering up, Zinc Oxide on exposed skin.
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Deb Grabetz
Moderator
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Posted: Thu Jul 24th, 2008 13:49 |
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Paul,
At first your bananaoidosis story had me belly laughing...as I read further I thought how clever! Yup, I'm sure glad these Gummy Bears & M&M's are working for us!
Last edited on Thu Jul 24th, 2008 13:49 by Deb Grabetz
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Knochen
Moderator
| Joined: | Thu Feb 23rd, 2006 |
| Location: | USA |
| Posts: | 380 |
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Posted: Thu Jul 24th, 2008 14:06 |
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Then one day whilst sitting in the hot tub he put 3+3 together, and as only engineers can shouted Eureka and came up with the answer
And why was he in the tub? Because his wife had already shouted "you reek-a"
You know what they say, "Behind every great man, there is a woman rolling her eyes."
BTW, great story. Don't forget that you can also take doodle-dust (often seen on cheezels) in the later phases to see if you can provoke a reaction.
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Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D 6 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
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Adrianne
Member
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Posted: Thu Jul 24th, 2008 16:00 |
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| Ha ha ha ha ha ha!!!! You guys made my day!
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CFS Ph1Jan07 ModPh2Apr07 Ph2Aug07 Ph3Feb08 L-tryptophan benadryl famotodine 25D9.1(Mar07) NoIRs limited outings covered
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Juanita
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| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
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Posted: Thu Jul 24th, 2008 17:54 |
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When you guys are well, you could take this on the road. Stand up Cheezdoodle Comics.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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Deb Grabetz
Moderator
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Posted: Thu Jul 24th, 2008 21:05 |
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Heh Knochen,
It is a really bad neuro day for me.....It only took me 15 minutes to get the "you-reek-a".....but, I got it, I got it....and you are entirely too funny!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Karon
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| Joined: | Thu Nov 15th, 2007 |
| Location: | USA |
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Posted: Sun Jul 27th, 2008 05:22 |
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Paul,
I need to thank you so much for the so very needed laugh. Keep them comming!! One day soon I will make you laugh too
I don't even know you but I just love you.
Happily Herxing in CA
Karon
P.S. I'm loving so many of you! Its a great feeling
Thank You
XOXO
Last edited on Sun Jul 27th, 2008 05:23 by Karon
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RA PTSD 125D73 25D20 Ph1Apr08 Naproxen Tramadol Valium-stoolsoftnr-Lowlux Home & Work NoIRS cover up
25D14.4(Jul08)Ph2-Aug08
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Deb Grabetz
Moderator
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Posted: Mon Jul 28th, 2008 11:20 |
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SO...... HOW'S YOUR DAY?
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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JanEE
Member
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Posted: Tue Jul 29th, 2008 02:07 |
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Deb,
That is too cute!!!
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
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Posted: Tue Jul 29th, 2008 03:08 |
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Here I go quoting myself again:
"I keep typing a Freudian slip--realationship instead of relationship. I don't simply want to "act" in relation to someone else; I want to be real with someone else. Actors need not apply."
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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