All I Need to Know About LIfe....

I learned reading fortune cookies. These little nuggets share a valuable perspective on life that far too many of us take for granted. Take these little gems for example....

"A light heart carries you through all the hard times."

"If you've got it...flaunt it!"

"Aim for the sky, because even if you miss, you'll still be among the stars."

"If I bring forth what is inside me, what I bring forth will save me."

and my personal favorite...

" If you bite the hand that feeds you, it won't taste as good as the food you were fed."

What do I take from all this? Well, I could take that these little tasty morsels are good tidbits to live by...or that we eat WAY too much Chinese food!!

loving the lighter side....

xoxo

Pandora

Just a little whine....

It has been a hectic few weeks around here....between work travel and family events, etc., things have just been a little crazy. I'm finding adjusting to my new state of health a little challenging. I'm having a lot of trouble accepting my life as it is now. I spend so much of my time tired. It is a balancing act trying to keep up the happy face and facade for work and people at home. I'm struggling with some inner demons. I don't want my kids to look back on their childhood and remember mom being sick all the time. I don't want them trying to take care of me and read when I'm having a tough day and when I'm not. So, I try to hide it. I try to push on and keep up with all the things I've always done. It sucks....royally. I absolutely hate having to ask people to do things for me....like open jars. My hands aren't my hands any longer. They have a mind of their own. It frustrates me that there isn't more information out there or better treatment strategies. What have we been doing in our healthcare research system that some of these same illnesses have been here for years and we are no closer to effective treatments or cures for some that have spent decades on the health radar. Not every disease has a Lance Armstrong or Melissa Ethridge to make it the disease of the day. We need to discuss equity in health research. Is it just a fantasy of mine that people will do the right thing simply because it is right - and in this case the people are health research companies. There are so many diseases that don't have adequate research dollars or adequate publicity and I could go on and on but, what good does that do me right now? I was asked recently what I was going to do with all this knowledge I have from this experience....how would I make the world a better place with it? Right now, I don't even feel like I can get me through it let alone be a champion for the cause...so to speak. So, I will quietly go back to my corner and have a bad day....

missing the world I knew

Pandora

Labels

Have you ever noticed we are all about labels in our society? No, I don't mean the kind printed by the little machines that you slap on your boxes and stuff away for storage...although a certain someone I know who reads this blog does a great job of labeling her boxes and storing them away for safe keeping (I'm still making it my mission to pull the labels off your boxes and mix them up and dump them out). Although labels have their place....in an office....we need to start doing more to remove them from our daily lives since they tend to segregate us and divide us.

We take every chance we get as a society to find ways to divide ourselves and pop on a label that makes us separate from each other and in the process we forget that we all share 1 label in common...we are human. While I'm all for celebrating the positive things that make us different, I'm also all for celebrating the things that should unite us. The labels are big and small - everything from our body types to our political parties...even the labels we slap on gender or sexual preference divide us.

I recently looked at a site that someone asked me to and while I agree strongly with what the site is looking to achieve I was struck by the mission statement. "Out of the shadows, we come as men of light, men of vision and men of honor - to replace what was lost, fix what was broken, and renew a pervasive conscience long considered dead." I'm not going to go in to the merits of the cause or the movement - I'm going to give you my initial gut reaction. Wow, this is a group for just men so where would I fit in? It struck me as another way of being divided. If the important thing is doing the right thing...righting the wrongs....fixing what is broken....then why does it have to be a man or woman issue? Why would it be an adult or child issue? It is a human issue. I know this will probably piss people off and I will be told I just don't get it but it goes to the larger point I am trying to make here. First impressions often cloud people's judgment. Doing the right thing is a noble thing and what we all want to see our society start to do more. People won't make it past the opening mission statement if they feel excluded. Everyone longs to be included or to at least have a filling of inclusiveness. Would the statement have lost its meaning if you took out men and said "people" instead?

I recently blogged about complacency and how when we speak up in certain situations we get labeled. Have you ever noticed those labels are filled with negative connotations? The bitch, the snitch, the troublemaker....all the things we get called when we speak our mind and voice our opinions about the injustices in the world. We let these labels put us in a position of fear and lock us in to inaction. We spend so much time worrying about what others think about us and their opinions. It is times like these we all need to take a page from our favorite childhood author...Dr. Seuss...“Be Who You Are and Say What You Feel Because Those Who Mind Don't Matter and Those Who Matter Don't Mind.”

By no means do I have the answers and I know I'm guilty of labeling just as much as the next person....so my commitment here and now is to embrace the things that I have in common with those I want to label with negative terms....I mean hell I can even find something I have in common with GW "Bubba" Bush...we are both living in Texas.

This is Pandora returning my label maker to Office Depot....

xoxo

Complacency - The Root of all Evil?

I've written a lot about accountability....I haven't been shy about my thoughts that we don't do near enough as individuals or society to hold people accountable for their actions. But, it dawned on me this week during a conversation with a friend that it isn't just the accountability that is the issue - we've grown complacent as a society. How many times when you see or hear someone doing something wrong do you really step in and say something....or do you do the "non-confrontational" thing and sit back and do nothing? We've grown complacent as a society and it is literally killing us.
Take healthcare for example. We've grown complacent about our healthcare system not meeting our needs as consumers - and that is what we are....consumers. If we went in to the mechanic and they ran diagnostics on our car....did a thing or two and didn't fix it.....we would be dissatisfied customers but more importantly would we use that same mechanic? Highly doubtful....so why do we go back to physicians who are inept? Because it is easier than changing our PCP with our insurance plan....or it is someone we have some type of relationship with and we don't want to take the time to demand better for ourselves....or a hundred and one other reasons that all boil down to the fact we are complacent.
How many of us see things at work day in and day out that we know are just wrong. We look the other way....not only do we not hold people accountable we are complacent about it...we make excuses like well that's always the way it has been. So if you see an injustice in the world you sit back idly and say nothing? While I agree fear is a great motivator....fear of losing your job...fear of being labeled the "bitch" or "difficult" because you speak up shouldn't handcuff you and keep you from doing what you know is the right thing to do.
We are complacent about our politicians. We complain about policies and fiscal irresponsibility but, we vote the same people back in to office. How many times around election time have you heard someone say...."No, I'm not voting - I don't like anyone running." Yet, they are one of the first to bitch about our current situation. If you don't get off your ass and do something to change it then SHUT THE HELL UP!
I could go on and on about all the things we are complacent as a society about....the treatment of women, the treatment of our animals (and I'm a firm believer that if someone is an ass to an animal that will tell you what kind of person they are), the lack of effective social programs - and I'm talking about everything from some type of affordable health insurance to our broken education and prison systems. Complacency is killing us. Are we just that lazy as a society that we do nothing? Are we just that beaten down that we live in fear of some type of social retribution so we do nothing? How do we expect things to change if we sit in silence and do nothing? If not us then who? If not now then when?

Kicking complacency to the curb

xoxo

Pandora

And the winner is.....

Some of you who have been reading this blog for a while know that I was on the great chase to figure out why I haven't been feeling well. Along the way I discovered many things about myself and the healthcare system. By no means has this been an easy journey but, like all things....no not good things....just all things....this too must come to an end. And the winner is...."overlapping autoimmune disorder". So when he said this I said....ummm in English please....and he told me Lupus AND rheumatoid arthritis. I think I liked overlapping autoimmune disorder better. Everyone I've talked to asks me what that means both with respect to treatment and long term prognosis. Honestly, I'm still finding out myself. Currently my treatment is NSAIDs, Immunosuppressants and a pain patch for my back since it is one of the worst joints with respect to pain. I can tell you what it means for my day to day life though - I have trouble with the little things we tend to take for granted....like holding a pen....don't get me wrong I can still hold it....just in a very funny and awkward way. It is very painful to try to write and put pressure on those joints in my pointer finger and thumb. Turning a can opener is a whole new experience. I love to fish...reeling in the catch has become a great fight even when it is just a kitten rather than a catfish. I can't walk 1.5 miles around a track....not because of my asthma ....I'm breathing great....but because tendons/ligaments/muscles in my lower legs get so tight they want to explode and that's the last thing I want to do is have surgery to repair those. I stay exhausted the majority of the time and really have to force myself to be active. Someone yesterday told me I need to focus on something beautiful in my life.....and each time I see my kids I am reminded to do just that. But, sadly, I also need to start to come to the realization that I am in for major lifestyle changes...at least until this is under control.
I also need to be honest enough to tell people that I'm pretty upset about all this. I'm 38 and have always been pretty active. I look back on the journey over the last year when I really started to feel bad and see how much things have changed for me and how differently I feel physically and it is hard not to be upset about the runaround I've been given by the healthcare system. I have lost my faith in physicians. I would have much rather they told me they didn't know and referred me to someone else than to sit around for months doing test after test and THEN telling me in a form letter they didn't know what the hell they were doing and I needed to see someone else. I'm upset that I am only 38 and this is something that will change the rest of my life. I know what I'm feeling is normal and natural and I need to embrace it. I refuse to feel sorry for myself. I've seen what that does firsthand. Back to the knowledge is power....I've not been given a lot of either from my doctor....knowledge or power so I'm trusting healthcare providers I work with to point me in the right direction to empower myself and those around me to know what this disease is and what it does. Here is a link more than a few people sent me and said in lay terms this is one of the best sites for describing the process so I hope you find it useful:
http://www.medicinenet.com/systemic_lupus/article.htm

If you choose to comment on this post ....which I hope some of you do....please don't say "i'm sorry". It isn't your fault....and I don't need nor want pity. There are millions out there with lots far worse than mine.

Swine Flu Parties?!?

Ah yes...gotta love Pooh! Okay, so I was watching Bill Maher and he was talking about people throwing swine flu parties and I really didn't think I heard him correctly so I did a little research and holy cow...he's right...people in America really are stupid enough to throw swine flu parties. Someone out there started this idea that they would throw a swine flu party in order to try to infect their friends with this milder version of swine flu...since the version that is predicted to be here in the fall will not be as mild. Oy Vey! People really are idiots. Chlorine for the gene pool...aisle 2.

So many of the communicable disease wouldn't be shared if people would just practice common sense prevention - wash your hands frequently (recite the alphabet while you do this so you know you did it for an adequate amount of time), cover your cough (don't use your hand - cough in to your elbow), if you have a fever or are sick be kind and don't share by staying home, eat a healthy diet and get plenty of rest and best of all - get your flu shot as recommended by the center for disease control.

Just my health tip for the day :)

xoxo

Pandora

Isn't Technology Grand....

Okay....so I learned this weekend that blackberry + saltwater = disaster. I have prided myself in getting more organized in my life. I have learned to keep everything...yes everything....in my phone/pda/smart device? I am soooooo lost!!! I missed an important meeting today because the time I had written down wasn't the final time we had agreed upon...that was in my blackberry. I can't believe the number of times I've reached for my phone....and then remembered oh yeah...it is DEAD! Hell....I even had trouble waking up yesterday morning since I use it as my alarm clock too. I can hear you all laughing and shaking your head about just how dependent I am on a 2 x 4 rectangle.

Just losing the use of my phone would have been bad enough but, couple that with the fact that my network server wouldn't allow me to check email for the better part of the day and my body is screaming that I've been technology and information deprived. Can you really think back to a time before we had instant access to things? Doesn't it scare you a little that we are raising kids that don't know what it is like not to have those things at their fingertips? That in and of itself raises a new question I guess - when is too early for kids to have cell phones? I used to say that I would never get them for mine until they were at least teenagers. I knew kids in kindergarten that had them and there was no way that would be my child. Now, I admit, I did give in and change my mind on the cell phone thing. It wasn't so they had a way to call friends, etc. It was so I had a way to constantly be in touch with them and believe me - they ALL fear the wrath of mom if they don't immediately answer a call or text from me. That is grounds for an immediate and unrelinting grounding for some time to come. With the phones also came a set of rules, they can't be behind closed doors talking to the few friends I allow them to be on the phone with. They can't give out their number to people without asking me first. They have a limited number of people (primarily family) that they are allowed to talk with or text with. The same thing goes with computer access. The girls (12 and almost 14) just now got their own email addresses but, those have rules too. Pretty much the same as the phone. I have passwords to both accounts as well. Just like I do with the websites they belong to and I will continue to monitor their activity. They don't have free reign to go to places like utube....even though their friends tell them they should. My kids get tired of hearing ...well...I'm not Johnny's mom...and if I were he wouldn't be allowed to do that either. Too many parents don't know what their kids are doing and that is just a scary thought for me. There are too many predators out there in this world...I know more than a few. I will do whatever it takes to protect my children as much as I can.....ahhh yes....isn't technology grand.

dialing in....

xoxo
Pandora

Could it be....

Could I really be out of things to say? Ummm no. I guess I'm just worn out and feeling a little uninspired. It has been a long few days....work has me a little more than whipped. It was a strange weekend..that was some derby...of course my horse was the morning line favorite...and the one that scratched. Go figure....I didn't pick the horse based on bloodlines or his past track performance. I picked the horse because of his name...I saw it and knew it was the horse for me... "I want revenge". I can't even begin to tell you how many people THAT applies to.

Spent the day at the Texas Capitol...wow. I'm amazed at how obtuse some of these people are. Do people really put some of these people back in office year after year?!? Why get in to public service and not have it be a service that benefits the public at large? It is similar to some of the "volunteers" I work with. Why do you want to volunteer and then not do anything? I'm still a firm believer - if you commit to something you have to follow through. We've all had things we've committed to do and realize later we didn't want to do them but, I for one still do it. Again, I guess just something else I'm "old school" about. I was left to clean up after someone today and it didn't go near as well as I had hoped it would but, sometimes you just do the best you can and pick up the pieces afterwards. Maybe after a day or two....when I'm done being pissed off....I will be able to see past my disappointment and find the lesson I was meant to learn from this experience.

Hopefully my witt and sense of humor will return and the next post will be more thought provoking....or at least have more thought :)

xoxo

Pandora

Swine Flu....err H1N1

If you haven't heard about the swine flu errr H1N1 flu, I would guess you've been living under a rock somewhere ....hopefully not in Mexico! There has been a lot made about this version of influenza....mainly because it is showing mutations that we haven't seen before. So is this the "big one"? Or is the media making this into something it isn't? Whole school districts are closing and hold the phone....sports in Texas are being postponed. That is unheard of. I am all for information sharing as we all know. I am just for accurate information being shared. In this day and age of instant news, it would be nice if some of the more reputable news sources did a little more fact checking before they put things out there. Thousands of people die yearly from the flu and we don't hear about them and track the number of cases by state/country. Why don't we hear about those deaths? Now on top of alerting us about the cases of H1N1...the World Health Organization (WHO) issued a release that we can't call it swine flu any longer because poor innocent pigs are being slaughtered even though there is no proof that there is transmission from swine to humans....we are the only "pigs" infecting ourselves. It isn't that hard to cover your cough...it isn't that hard to wash your hands....just practice good infection control.

What do the rest of you think? Is this an overreaction by the media or the public health officias?

Covering my cough....
Pandora