maria's Journal
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November 24, 2009
Beatle Heir Making Good on Lupus "Help"
With the recent passing of Lucy Cook, the inspiration behind the Beatles song "Lucy In The Sky With Diamonds" and fellow lupus patient, there has been news that John Lennon's son, Julian Lennon, will be teaming up with songwriter James Scott Cook on behalf of raising lupus awareness here in the Us and the UK.
The following LFA article is listed below that tells more about the artists and their commitment to not only this friend, but to also offer her another legacy to have left with us. The song didn't mean very much to her - in fact, she didn't like it. Having suffered with lupus, however, we would hope that the upcoming song tribute and proceeds will have made all that she endured a gift to many others.
Read more, and the linked USA Today article at the bottom of the LFA's write-up, here: http://tinyurl.com/ygszlrd -
September 23, 2009
Watching the bouncing ball~
In my 'younger days' (I'm 46, but talk like I'm 90-just bear with me), those ups and downs were exciting because I knew I would bounce back. These days, there's a little less bounce in this gal - physically and emotionally.
Aging is only one part of that, though. Living with a condition that is so full of surprises all it's own is a whole 'nother ballgame. I think that the constant guardedness that I feel in monitoring my flares hampers my ability to be more emotionally ready to handle life in general - primarily because I don't pay closer attention to the importance of flexibility. I've become unneccessarily more rigid in my days, freezing my emotional 'plasticity' as well as the cognitive or mental plasticity that is so important to maintain as we age.
When we are younger - and healthier - we absorb our days, experiences and observations. When we lose our health and youth, we harden and become more 'closed off' trying to protect ourselves from the things, people and situations that threaten our comfortable 'fortress' we build around us. I understand that. I'm learning a great deal about the deep-seated sense of control that underlies nearly every thing I do, every thought I think and every move I make. In that need for control, I've lost my ability to bounce - or have I ?
I started a book discussion group where I introduced the book Outdoor Fitness. Just as I started that, my blog was hacked and destroyed by people who have nothing better to do with their days. Added on top of that is : the Oregon unemployment rate returning to 12.2% (pitting all of us looking for part-time work against each other with intense fervor); both of my daughters now being in high school and walking magnets for the H1N1 virus to bring home and share; the healthcare debate resembling more of a circus than a promise of hope; food, utility and daily living costs skyrocketing without any regard to the fact that people don't have as much in their pockets; and, last but not least, doctor and dental offices requiring full payment before any services provided while the banks find any loophole they can to charge fees from us turnips....everyone is circling their wagons to make sure they can keep what they have rather than join up to figure out what can be done to help everyone out even if just a little.
Yep, I'm bouncing alright - off the walls. However, all that stuff putting the momentum behind this 'ball' is susceptible to Newton's Laws of Motion, too. I will give my layman's definition of these laws as they apply to myself. I'm living with not only the daily grind on the outside, but, also, as someone whose immune system has an ax to grind itself:
First Law: Law of Inertia
Basically, this law tells us that a 'body' remains in a state of rest or consistent state of motion unless something externally is allowed to apply force changing that state. We all know we can't control instances 100% where we can maintain our consistency or rest. What we can know, however, is that we have that state within us and no one can take it away. When things do apply their force upon us, we have a right to manage the amount of that force and have a place to look for as we bounce our way back. This rest state is what is truly 'normal' for us - the bouncing is brought on by outside influences, but minimize those influences and you will be at rest much more often.
Second Law: "Force equals mass times acceleration" (based on the First Law)
The force or impact we experience is equal to the particular force times how fast it comes at us. Again, we can't control whether it comes at us, but we can tweak this equation and possibly manage the impact by looking at the particular force and the rate of speed it arrives. With lupus, we can't know for certain when things might be a problem, but we can minimize the number of 'forces' to deal with by managing things - meds, diet, exercise, emotional needs, work schedules/hours, social events, amount of sun, which doctors we choose to have on our health team...etc. We can also manage just how quickly these forces come at us by being involved in monitoring the build up of speed - being organized in our overall health management. Are our needs being heard by our family/doctors/employers? Are we getting the rest we need? Are we choosing to attend social events (which is important), but limiting ourselves to only what we can 'safely' handle? "...when the net force on the body is zero, the momentum of the body is constant." (ref:Wikipedia online)
Third Law: Law of Reciprocal Actions
To every action there is always opposed an equal reaction. If you were to push your hand against a door, that door is pushing back at you. If we push ourselves to do things, we should expect that things (like our lupus) will push back. If you sit on the sofa and avoid social events, that sofa pushes you back with isolation and poor heart health. The velocity, force, and other mechanical details aside, this law helps us remember that getting through our days will be a balancing act no matter what course we take. It also allows us the realization that if we do manage the force we apply to ourselves -externally or internally, there will be a reaction that will respond to that force. This gets tricky, especially when there are emotions/people/medications involved. For the most part, though, understanding the action-reaction law keeps us in the present when we make our choices - something vital in managing lupus flares.
I am getting my new blog put together now and, although it cost me a pretty penny due to the viral complications, it has also offered me a whole new opportunity and emotional cleansing. Priceless. The exercise book discussion went nowhere in terms of discussing it with you guys, but I read some stuff in it and did utilize some of the exercises that helped me get through this blog ugliness.
There was chaos and change forced upon me at a time that I wasn't expecting it, but by returning to these laws when things got out of control helped me clarify my perspective. I'm no scientist or engineer, but I do know what works for me. Now, I'm going to go get some things done around here with a little more assurance that there is a state of rest or consistency that I can create for myself today...and I am going to go find it with a little more bounce in my step.
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August 02, 2009
So, here we are...
I reluctantly started with this network because I am already so overwhelmed with deadlines and tasks for our Pacific Northwest lupus project called My Life Works Today! I knew that getting here and staying relevant was going to probably push things over the edge for me. But, I did it anyway and here's why:
Just as our project's name implies, the name of this network shows how lupus is put into a perspective that celebrates not only the fact that we all have lupus (yay.), but that we collectively represent what life is living with lupus. Having had lupus for about 12 years now, I am an expert of living with it in my own mind. Participating in these networks helps me to see and hear from others who have it so much harder than I do, and I need that. I need to learn more about other organ involvement besides kidneys. I need to hear about other medications being used. I need to hear about the short cuts, recommendations and similar challenges that others are using or going through....because tomorrow, I could be in their shoes.
Having had lupus this long with a pretty good track record can easily put me into a lulled state of calm...which is good for my lupus, but not good when I translate my 'success' into 'victory'. I don't live in fear, but I also don't keep in mind the adage 'keep your friends close and your enemies closer.' Lupus is a part of who I am and it is communities like this one who help me recognize that and keep it relevant in my days - full of choices, promise, limitations and the need to remember that I am not lupus...
we all are.