“It is not enough to be compassionate. You must act. There are two aspects to action. One is to overcome the distortions and afflictions of your own mind, that is, in terms of calming and eventually dispelling anger. This is action out of compassion. The other is more social, more public. When something needs to be done in the world to rectify the wrongs, if one is really concerned with benefitting others, one needs to be engaged, involved.” ~Dalai Lama
It is not enough to be compassionate January 21, 2010
How does your foot taste now? September 29, 2009
Two things are infinite:
the universe and human stupidity;
and I’m not sure about the universe.
~ Albert Einstein
Forgive me… I just feel the need to rant for a minute about the stupidity of people when it comes to dealing with chronic illness. I say stupidity instead of ignorance because there is a HUGE difference.
Ignorance is genuinely not knowing something. If you don’t know about something then it is your responsibility to seek knowledge and/or understanding before you speak about it or on behalf of it.
Stupidity is just speaking about something without the knowledge or caring to understand.
Sooo that being said to all you “normals” out there that have chosen to act stupidly in my presence when it comes to my illnesses and/or diseases, don’t. Just don’t say a damn word. You don’t know me, you don’t know my coping mechanisms, abilities, or tolerance levels.
Since I was a teen I was on the go from the time my feet hit the floor early in the morning until almost midnight. I went to high school, I worked since 14, volunteered as a tutor, AND took college classes.
I started nursing school in 2002 as a newly divorced mother of two kids. I worked, went to college, and took care of my kids. During the first year of college I had 3 major surgeries within 5 months all done on a Friday and I was back to class on Monday. I was also homeless at one point during that time.
NOW, talk to me about “staying determined”. Now, even with 3 diseases I constantly battle every minute of the day I am the Executive Director & Treasurer of a non-profit charity that on some days I have to run from my bed. Determined? Maybe not to some people, but I AM determined to make everyone who judges me for a second to feel as stupidly as you act.
The lesson here? Know what the hell you’re talking about before you question my determination and forgive me if I might wish for a break from the external forces that causes me so much pain from time to time. (Like the weather) I didn’t mean to disturb you!
Today, Fibro might’ve won my body… September 12, 2009
“I like living.
I have sometimes been wildly, despairingly, acutely miserable..
racked with sorrow, but through it all I still know
quite certainly that just to be alive is a grand thing.”
~Agatha Christie~
Today… I think my body decided that it’s time to go down for the count. Sitting up is tiring! So this is going to be short in all likelihood. I did manage to work on a few things for CWL from my bed this morning then a fever came and now I’m fighting the urge to lay down & quit. I feel yucky and want to take a bath but I know that even changing clothes is going be a chore. This is when I really get frustrated with being sick. I can do without being able to do things I WANT to do in life most days.. but the things I NEED to do are harder to handle when I can’t. It really really sucks to have to find a compromise with your own freakin body…
Yes.. I know it could be worse.. a lot worse. Which is why I don’t post many negatives. I hate feeling like I’m complaining. There are times tho that I get so frustrated with the limitations imposed upon me that I just need to say “I HATE YOU FIBRO & stop dragging me down!” to get rid of the negativity that can often poison my thoughts.
Today, Fibro might’ve won my body… but I won’t let it have my thoughts too…
Finish each day & be done with it September 10, 2009
*Finish each day & be done with it.
You have done what you could;
some blunders & absurdities have crept in;
forget them as soon as you can.
Tomorrow is a new day;
you shall begin it serenely &
with too high a spirit to be encumbered with your old nonsense*
~Ralph Waldo Emerson~
I was still dead tired after sleeping 10 hours the night before, fell asleep around 10pm and CRASH!!! Two brat cats knocked over a whole container of paint brushes from the highest shelf in my craft area. A bit later, I start dozing off again and one of them was climbing again knocking stuff around.
I’d bet money.. it was this one:
Bella
Sooo… I got up thinking it would give me a chance to let the nice little adrenaline rush die down and work on … well you know.. my charity stuff. LOL (by now that’s probably a given) Well, thankfully a wonderful friend on Twitter kept me company for a while. I LOVE Twitter for the gifts it’s given me… friends at any hour, for any problem or reason. 
I finally got back to sleep around 1:30am and slept until 6:30am. I do feel better today mood wise & body wise. No guarantees that it’ll last so as I’ve learned in the 5 years of being sick… enjoy every moment while it does last. Even short periods of feeling ok make it easier to deal with the not so good periods of time. Fibro absolutely taught me to be thankful for each descent moment, because in 5 minutes it could very well change. Even in bad moments I try to remind myself that I’ve had worse times and others definitely do. It also taught me that when the bad ones pass, let them go and don’t look back. If there’s something I know caused it then try to do better to prevent it, but beyond that don’t waste spoons trying to figure out or beating myself up about it. Any negativity causes more pain & fatigue, whether from myself or someone else. Sometimes it’s the little mind games we play with ourselves that helps us get through… and I’ve learned a few of them along the way. The best of them is to try to find something… anything to be thankful for each & every day. I am also good at telling myself that nothing lasts forever and this too shall pass.
I’m happy today and glad that yesterday has passed..
Melancholic Happiness September 9, 2009
*If you don’t like something, change it.
If you can’t change it, change your attitude.
Don’t complain.*
~Maya Angelou~
Wow! I must’ve be tired! I went to sleep around midnight & slept until almost 11am this morning. Of course the consequences of that much sleep is an unrelenting headache. Living with Fibro is like trying to balance 100 plates on your arm and none of them are in alignment. That saying.. “damned if you and damned if you don’t” should be the tag line for this disease.
I’ve been working away on a few projects and happy with the bit of progress I’ve made. My head is better but for some reason, I still feel a bit melancholy. Almost like I could cry any minute. Why? I have no idea. Nothing specific has happened to cause it. I’m tolerating my pain & muscle fatigue. Other than still needing rest and possibly the rain that just started, I really have no idea. I feel like being left alone with no noise. Wednesday’s are usually my favorite day to goof off on Twitter because it’s hump day.. (don’t ask if you don’t know) LOL I’ve barely tweeted today. This is a rather frustrating feeling because I also feel happy about the things happening in my life. If it’s possible to be melancholy & happy at the same, that’s me today.
I did have a conversation with Laura Kennedy yesterday about her radio show and I’m going to be talking with her on Tuesday the 18th to discuss Crafters with Love. I’m so excited with the growth and the help I’m still receiving.
I started a new page just for the CWL news if you’re interested in keeping up: Crafters with Love News
Not much else to say except that I hope this yucky mood goes away soon… I hate it! I am going to do some more work and planning to keep my mind busy.
Mark Twain was right! September 7, 2009
*Keep away from people who try to belittle your ambitions.
Small people always do that
but the really great make you feel that you, too, can become great.*
~Mark Twain~
My lucky streak of sleeping all night has ended sadly. I woke up at 4:30am this morning and couldn’t go back to sleep. I like to call 3-4 am my fibro witching hour. I always wake up around that time & can’t go back to sleep during insomnia phases. Yesterday I was leaning forward to let hubby put a icy/hot patch on my mid-back and pulled a muscle in my lower back. UGH! Been tough to move. Otherwise I’m doing well today.
It’s Labor Day today which means no work or school for the family. I’m working away on my baby (Crafters with Love). It’s growing every day and it just amazes me the response I am seeing. Everything I attempt to do for it to grow is taking off. Every day I’m pleasantly surprised with new ideas, offers and willingness of other people to want to learn more about it and help. I have another crafter on board, my best friend Kathy, who makes amazing jewelry. I’m also in the process of getting confirmation back from 3 more who have offered.
Let me also say that I am forever grateful to my friend John for all his time, advice and efforts in helping me. Roxie, who has lent her talents to the cause as well as wonderful ideas to promote it. Amy, for her gorgeous painting talents & Dawn along with everyone on Twitter & Facebook for passing the word along.
All of this is proof positive that the “feel good” chemicals in the brain help get rid of pain.. Since Crafters with Love has taken such a tremendous leap recently, my pain has been a lot less. I’m more tired, of course, but that’s ok. It’s worth it because at the end of every day my heart and soul beams with pride at the accomplishments I & my team have made toward our goal.
My team= my most loving and caring friends who are working right beside me on their own time toward bettering Crafters with Love. If in the end, all my efforts fail with the charity (which will not happen) I still have learned who my true friends are and know that they believe in me. AMAZING people that I’ve never even shaken hands with. It’s so great to still be able to believe in the human spirit and people after having spent a lifetime of being able to count on no one. 
Funny thing, someone asked me if I was working today and when I replied that I have too many health problems to work they naturally & sweetly apologized, immediately my response was “don’t be sorry, my health problems were just a redirection.” I’m not working as a nurse like I hoped to be, but I’m doing something just as good if not better. Better, because it’s all on my own and nothing is expected of me that I can’t give.
I didn’t like to blog about Fibro before (and probably why I haven’t formed that new habit I wrote about before) because I always felt like I was complaining. Now I’m finding I WANT to blog. For the first time since becoming sick, I have exciting stuff to say that over rides the bad stuff happening to my body. I hated when people asked how I was feeling because I had nothing positive to say. On my worst days, when it was really tearing me down emotionally I kept it inside because I didn’t want to depress anyone with those bad thoughts & feelings. I felt like I had nothing to look forward to the next day except maybe a glimmer of hope that I would feel better. Every day I wake up now since my charity has taken off, even if my body lets me down and I have to stay in bed the whole day… I can say I accomplished something great and still have something else to look forward to.
What a blessing of love I’ve been given.. giving and receiving each and every day.
Lucky & Loved September 4, 2009
“The world is not respectable;
it is mortal, tormented, confused, deluded forever;
but it is shot through with beauty, with love, with glints of courage and laughter;
and in these, the spirit blooms timidly and struggles to the light amid the thorns.”
~George Santayana~
What a busy week it has been. A struggle for sure but filled with so many rewards.
Yesterday I had a phone call regarding doing an internet radio show to promote my charity work!
The Crafters with Love Fan page hit 200 fans this morning.
@crafterslove on Twitter got 500 followers this morning
and I just got 3000 followers! WOW!
People are donating money, time, their talents, their Twitter streams & avatars.. It is simply overwhelming what people are doing to help my cause. Now I look back at a previous post I made about not being able to be a nurse (Read it here) and believe that I have my answer. Things like “Nick” and the boom that Crafters with Love has gotten in less than a week doesn’t just happen. It was handed to me … and I’m going to use my gifts & my tremendous love of people to do whatever I can to make it grow.
When I reflect over the past week alone, my head just spins in amazement that the wonderful things that have happened and the lovely people I’ve became friends with as a result. Truthfully.. my body isn’t dealing with it, but I feel SO blessed in this moment in time to be given such a wonderful opportunity to touch lives.
The world can be respectable and I’m seeing it each day. How lucky I am to know so many beautiful people!
Seeking Inspiration September 2, 2009
Trials, temptations, disappointments;
all these are helps instead of hindrances, if one uses them rightly.
They not only test the fiber of a character, but strengthen it.
Every conquered temptation represents a new fund of moral energy.
Every trial endured & weathered in the right spirit makes a soul
nobler & stronger than it was before.
~James Buckham~
Since last Friday I have been working my ass off putting together a specific charity cause for a guy that I’ve never met, who lives in Texas and has just REALLY had it bad. It’s one of those inspiring stories that touches your heart as soon as you read it and makes you realize that no matter what you’re going through.. someone always has it worse.
Read his story & about the cause here: Nick
I’m pleased with my efforts and it’s absolutely worth it! However, today.. I’m exhausted. I have struggled with sleep, nausea & fevers all week! Today, I’m resting in bed and plugging along with a few things for Nick’s cause. Everyone has been great helping me, it’s amazing the response I’ve gotten in such a short time. This confirms to me that I’m doing the right thing and it’s fantastic to see other people who believe in it too! Feeling this bad.. the natural tendency is to go into self-preservation mode and shut out the world. (EVERYONE) One small addition of stress will make things worse. I love people.. I love helping them.. I love listening to them & being there for them.. so I’m torn between my heart & my body. My body just wants me to lay here and stare at the wall all day but my heart has so many goals to accomplish & that battle in turn makes me feel a bit discouraged. So… instead of giving up on today and what I want to accomplish, I turned to my quote collection for inspiration to get me through. The quote above is what I came up with.. and between that and the out pouring of love & smiles I am receiving from my Twitter friends… I’m keeping up the fight.
No matter what.. someone always has it worse.
For the Sake of Accomplishment August 31, 2009
“Ability is what you are capable of doing
Motivation determines what you do
Attitude determines how well you do it”
This morning I went through the classic mind/body battle. The one where your head motivates you to move and when you do your body says.. “What the hell are you doing?!?!” I tried the “mind over matter” tactic and even had a distraction. Now I’m sitting here feeling frustrated with how tired I am after only have cleaned my cluttered night stand. I WANTED to clean my craft area that’s been seriously neglected for a while but just knew that was going to be impossible today with a few bad nights of sleep.
Was it really worth the pain & fatigue I know feel? YES! I not only have a clean nightstand that was bumming me out everytime I looked it, but I fought back against my fibro and it’s unrelenting tug & pull it has over me & my life. Sometimes I have to give in and accept that it is what it is and distract from any negative feelings that it causes, but today I wasn’t letting that happen.
Small victories are none-the-less victories… I feel tired, but accomplished.
Added: After publishing this.. I realized that even sitting down and writing this through fibro fog was also an accomplishment. Another small victory!
The Thing about Life August 18, 2009
The thing about life is that you must survive.
Life is going to be difficult, and dreadful things will happen.
What you do is move along, get on with it, and be tough.
Not in the sense of being mean to others, but being tough with yourself
and making a deadly effort not to be defeated.
~Katharine Hepburn
This quote is another that I have collected and today it’s the one that stood out to me. I don’t know why.. but it did. Maybe God’s way of encouraging me because I didn’t sleep well and have already needed pain medicine. These days are so discouraging sometimes. I just try to remind myself of and be thankful for the days before that were good or at least descent.
I’m hating being sick today. Not that I enjoy it so much any other day… I just tolerate it most times, but today I’m really resenting it. My daughters need to go pick up their schedules at the high school, which I could do.. but my daughter has apparently already made arrangements with her boyfriends mom to take both her & my stepdaughter without ever having talked to me about going.
Is she trying to save me the trouble? or has she just given up on me? Either way, it bothers me.
I believe that sometimes in life, all you have is your word… given that my health sucks I can’t even give that. I can’t be depended upon and that breaks me heart when it comes to my kids. *sigh*
I need to find a way to pick myself up and dust myself off and get through the day, being upset will only make the pain and fatigue worse. It’s probably a good time to review the serenity prayer too. That always helps me.
The Serenity Prayer
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Although known most widely in its abbreviated form above,
the entire prayer reads as follows:
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.
