Glorious....

Well…maybe not totally glorious...but having a modicum of glorious this morning!  No fluid in the bottom of my lungs…no fluid around my heart but still a mess of junk in my lungs…So I am going to call it glorious…It would be even more glorious if I did not feel like crap.  But bumping up some meds and little more glorious is on the way!  As for the unstructured wish….please….please….make this stuff just go all way.

"Heal Yourself"  Ruthie Foster

I Want to to be a "Spoonie"

I suspect anyone living with a chronic illness understands how it feels to take literally pounds of pills, to ignore or struggle with depression, or wrestle through the simple tasks of life. If the illness happens to be “invisible,” even good friends and family can have a hard time truly understanding what it feels like. I am never sure how to respond to greetings of “you look great”. I am truly convinced that if you have not experienced a long-term chronic illness that this may be really difficult to understand.  I can only assume that looking good means that I am not emaciated and that I have all of my hair.  Even I have to admit that is a pretty low bar to get over to the “you look great” category!  I will take it anyway!

I play games with myself.  One is I get up and get dressed every day, does not matter how I feel….period.  Get up...get dressed in street clothes.  I make the beds.  I do the house chores.  This is my last vestige of normal.  I used to hate all of these things; I did not realize what a blessing it was to just simply have the energy to do them.  I never had a grasp on how to manage my energy…there was always energy (that was never an option) my challenge used to be finding and using my time well.

Today I was introduced to a visual way (of course that appeals to me) to manage or actually be aware of my energy level and to choose how I want to spend it.  There is a group out there that call themselves “spoonies”.  They apparently have the same problem I have about managing energy.  The give themselves a bouquet of spoons that represent a full day of energy and then subtract the spoons as their energy is spent, providing a  clear visual picture of what I can or cannot do without wearing myself out or making myself sicker.  I think I am going to try this….clearly, I need to do something to get this energy thing under control!  Besides, it gives me a great excuse to find and collect some very cool artsy spoons! Woo-Hoo!

"Shine" Jason Mraz

Never mind!  As it turns out I already have funky spoons I found at a second-hand store quite some time ago. They were labeled as "tasting spoons"  I had no idea what I was going to do with them a couple of years ago so they have just kind of sat around..

But now I know  exactly why they came into my life  With a wine glass (I have plenty of those) to hold my bouquet of funky spoons

... I am officially a spoonie!

Stay tuned...I will let you know how it works!

Rituals, Appliances and Installation Manuals....Oh My

One of my official titles still remains “chief cook and bottle washer” but that title only applies in the presence of an automatic dishwasher!  

When we moved into this little house 40 years ago…there was no AC…no clothes dryer (everything, even the mountains of diapers went outside on the clothesline), no microwave oven, no color TV and no dishwasher.  Over the years and several well-timed protests combined with serious budget belt-tightening, we were able to move into the modern era.  Our kids laugh when I tell them this story and then they sarcastically ask how deep the snow was when I walked to school. Now it seems that one by one the precious appliances are just wearing out and in need of replacement. As most of the Christmas, birthday and other holiday family rituals have moved on from our house to the boys own families homes, the one ritual that does seem still remain is installing a new appliance. 

The new replacement dishwasher was a wonderful walk down memory lane and a wonderful reminder that some things will never change.  There is the predictable hunt for the right tools and the boys refusing to even consult the installation manual while grousing about the appliances design flaws! My job, as always, was to simultaneously monitor the work and the installation manual, occasionally pointing out the paragraph that would explain the current problem.  I had forgotten what an exciting important family ritual the installing a “new” appliance had been.  And again how absolutely wonderful it was to have tools and “mystery” parts strewn about the house.  The delightful memories of past ritual installations are almost as exciting as once again to have the dishes done….not by me!  

"Do it Again"  Steely Dan

Sometimes you just need to look for a little weird and break some rules!

…this is kind of what happens when I have had my wings clipped and required to rest (which even I will admit was not hard to do this time, my head kept saying go…go...go and my body said… oh hell no!).  But then there is the internet…I decided to really explore...I mean the real internet not Facebook, email or the news feeds...maybe even attempt to be productive! Holy crap, the things I got done and the people I have met!   I ordered a new dishwasher to replace the one that bit the dust, and it has already been delivered this evening, I did a little shopping for grandkids birthdays coming up this month they are being shipped directly, bought and listened to a new book and found a few new chat buddies. The degree of that weirdness has yet TBD, but in the meantime had some great interesting discussions, but then I love weirdos!  No way could I have accomplished all of this in one regular human day.  It was like breaking all of the rules while still behaving and following the nurse's instructions...it is a win-win. Naughty and nice at the same time… It was great.  However, tomorrow we need to install that damn dishwasher…there may be some rule breaking…oooops! Sometimes you just need to look for a little weird and break some rules!

" More of That"  Eric Bibb

But...What if I do not want to stay on the porch?

But what if I do not want to stay on the porch?

And here I am again….What I want to do and what my body will do are 2 entirely different things… So here I sit, lay, wallow, suck on a nebulizer, swallow even more pills, if that is possible and in general feels like crap and I wasn’t even running with the big dogs, it was more like just waving at them from the porch!  The most heinous part of this wretched

disease is that I really do feel like doing it, yes I am a bit slower but there are no emotional or physical “stop sticks” in the road to keep me from doing what I love and want to do, just big old thumping clubs that show up after the fact as (and this seems to be the favorite) lungs full of fluid and in the case again….pneumonia…Damn it!

This damn disease has no fucking rules….what DID WORK last week might not work this week…. and from the other direction WHAT DID NOT WORK last week might work this week.  There are no heads up, no clues and very few telltale signs ahead of time that give me any warning…It is maddening!  Do I just lay around and fade away slowly afraid to try?  Afraid to live?  This is the absolute worst part of this!  What it does to my head, is 3 times worse than what it does to my body!

 "Broken Things"  Dave Matthews Band

42 more things to learn!

And just about the time I think I am getting so close to figuring just one thing out, it blows up in my face….and I still have at least 42 more things I would like to figure out.  Lessons come in no specific order, nor do they come with a set of instructions or a neon sign with an arrow pointing to “here is the lesson” you should take away from this experience.  So I wade into situations with my head and heart open and for the most part, I have never regretted it.  Some lessons are much harder than others but I have yet to not learn something from even the very worst experiences. And so it goes…I continue to learn about me.  At my age and this point in my life, I am still learning how to make decisions that are good for me, and how to control some of my bad decisions that are made solely on my need to be liked and/or loved by others.

"Jagged Little Pill"  Alanis Morisette

Rainy Days & Mondays

I think that when it rains first thing Monday morning, that whining would not only be permitted but encouraged!  And they are predicting days of rain, I am already exhausted and feeling quite “moldy” after 2 days of cloudy schmutz…now it is full on raining!

This past week I have had a couple of come to Jesus moments and it is becoming difficult to handle emotionally and physically.  This business of how much I can do “comfortably” is such a weird thing!  To be quite frank, I have never really understood exactly what that means.  Not certain I know yet. What I do know….is that I don’t know…Are you confused yet?  So am I!  It seems that I am hitting a serious wall and what I want to do is getting frustratingly compromised with the price I have to pay afterward.  Even when I make serious efforts to mitigate the amount of “after effects” they seem to be getting more and more debilitating and the price my body demands I pay for it is getting higher.  The wicked part of this is….I want my life to be active and full, my desire to be normal always overshadow my ability to make better choices about what I can physically do. The physical price my body demands after the fact is getting bigger and uglier each time I try to live my life!  I want my old life back!

"Rainy Days & Mondays"  The Carpenters

I promise.....no Gator games!

Into the second week of this online class…and damn the instructor is making me think!  I hate when that happens!  I am so lucky to have this class “Art & Healing” through the nursing school an UF.  What surprises me regularly is the thought-provoking “woo-woo” this well respected medical academic institution is embracing as part of healing.  For the record…There is a part of me, deep in my gut, that knows creativity/purpose and healing are connected but I just have not figured out how or why!  I do not want anyone to confuse my “healing” with the obvious characterization of physical healing of the body. My interest is in spiritual healing of accepting life as it is, not as I would like it to be.  I have seen so many that I know and love, throw away what I suspect maybe some of the best most profound parts of the end of life, trying in vain to heal the body, while their beautiful spirits wither and darken in the desperate futile fight.  And another “for the record” tidbit...the spirit, for me, does not include wings and a flight to a happy place in the sky spending eternity in the bosom of my family actually that seems a bit closer to hell than heaven. I do not pretend to have any idea what the afterlife is going to look like. I know what resonates and feels right in my heart. I know that quite frankly none of us will know, we can believe but we cannot know, about the afterlife if indeed there is one, until we get there. Worrying about it, studying about it, praying for it, is not going to change what actually happens.  That is ok with me….actually, it is one less thing to do and think about.  It gives me so much more time and energy to figure out how to live, love and enjoy all of the wonders of the miraculous life I have now!  For now, all I know is that there is some connection between creating.  And creating covers a multitude of activities, cooking, gardening, making music, writing, teaching, making unexplainable connections with people and animals, actually, almost every activity we enjoy and are somehow connected to can be experienced and called creative or purpose). Knowing there is a connection between purpose/creativity and spiritual healing is one thing, understanding how it works and how to bring it fully into my life is another.  I am looking forward to this class continuing to "challenge" how I think! My only hesitance is I can see my #2 son rolling his eyes when he finds out I have "defected" to UF  but I promise I will not go to any Gator games! 

"I'm Here, I'm not Here"  Julia Stone

sooooooo.....worth it!

Oh dear lord…I am such a weenie! The crap involved in going out and doing something this fun is absolutely embarrassing, exhausting and sooooo worth it!

But there are always lessons to be learned…lol…Uber to and from…tickets, dinner reservations, portable oxygen tanks and a wheelchair is a flipping bunch to keep up with.  (pssst…I do not recommend cocktails for the wheelchair pushers…lol!) And OMG!  Roads around the Amway center were under construction and  TORN UP.  We ended up having to walk a block or 2 to get to a place where the Uber driver could actually get to us…Can you imagine having to tell the driver we are 3 old ladies with a wheelchair in downtown Orlando at 11:30 at night on the corner of Central and Hughey.  The Uber driver could not get to that corner either although we thought that particular corner was an excellent plan (who Knew???)  Any way….The most amazing Uber driver parked his car a block away and WALKED down the street to come find us!  Thank you, Mario, from Venezuela you are the bomb!  Thank you to Terry, Holly, and Mario that put up with the ridiculousness that surrounds me…you let me keep going…and going…and going.  I never get to know when it is the last time, and do not want to miss a thing…  Ed was here this morning….applauded my tenacity then shook his finger and said

do whatever you feel like doing….but do not overdo…You may have gotten really close to “overdo” last night…But again….James Taylor and good friends…the brush with that elusive “overdo” it was worth it!

"The Secret of Life"  James Taylor

Guess where I am going?

Good friends, good food, too much wine, my favorite 70's singer songwriter.....and Uber...

What do I need to heal?

I think I know the answer…it is in the mechanics of just how one goes about accomplishing it that I get fouled up. When I asked the question, I was met with a very quick answer, love yourself just like you love others, like my children or my husband.  REALLY???  That is the worst answer ever.  Not because I do not love them with all of my heart, but mostly because, when I look back 90% of my actions were based on what I was taught a good mother and wife and love should be…and I was so bad at it!  The house was always a mess, I could not keep the boys clean, the dirty laundry was stacked in mountains, and the clean laundry rarely made it into the drawers, the kitchen sink was always full of dirty dishes, and my list  reasons that screamed I was bad at this role as mother and wife were evident no matter how hard I tried.  I was always exhausted and felt like if they loved me they would see me failing… drowning…. finally, I went to work to do something…anything that others would see I could be good at.  I was good….and now that I am not working I am desperately looking for something anything to define myself as good…but this time I have to define “love me” without the aid or advice of anyone else. Now I have to really do the work!

"All We Are"  Matt Nathanson

it was not gossip…it was real…

I grew up in this town, grew up and played with the Knowles kids. I remember the gossip that we were all forbidden to talk about, but often when the grownups were having their cocktails we would sneak up hiding there close enough to overhear the gossip discussions.  Our house was particularly designed for just such covert operations!  Back then it just seemed to be normal.  We would slink back without notice. When I try to explain to my grown children how it was when I was a kid…I wonder if they could possibly believe the stories I share with them.  I think everyone should read this…it was not gossip…it was real…Wondering if we are heading back to these times.

"Breaking Silence"  Janis Ian

There is a possibility.

And this journey begins with me embracing the prospect that I am worth it.  All I have to do today is acknowledge that there is a possibility!

"Reflections" Marmelade

Seeing the oxygen masks drop...

The ever-popular airline speech analogy about putting the oxygen mask on yourself first before you can help others is a clear picture of you must be good to yourself first.  It is a concept that is fairly easy to realize intellectually but emotionally, it is a different story.  Especially if you are a woman with children that has been well versed in the good family values of children and family first.  Of course when you do not have the money to do anything else...I became respectable by default. I was a good person, mother, wife and  I waved that flag for years.  As the children left home and had lives of their own moved on to teaching artists, and still had a flag to wave proving to others my “goodness”.  Please do not get me wrong, I loved every moment, I do not regret a single moment, but as life changes again I am realizing that I used those roles to define who I was, to me.  I did not have the courage or the knowledge to assess my own self-worth. for myself, I depended on others to make that determination.  I accepted and sought out others opinions of me to define who I was.  Now the journey requires that I figure this out on my own, with no audience no flag and it is as scary as seeing the oxygen masks drop and not sure what to do next.

"Bitch"  Meridith Brooks

It ain't pretty...

I am in week one of the UF Art Healing course and have really been looking forward to it.  It did not look like more than the typical art therapy things I have seen and rejected.  The first week the instructor wants us to do an art journal and already I am disappointed…not this again….I have done the art journal thing several times and they have always been wonderfully insightful, but after 3 or 4 journals (that does not include my writing journals) I am pretty much over the journal thing.  But I was committed to giving this a shot, so I let go of my crappy attitude!

Already this is horribly impactful.  What is different this time is the title of the pages…and they are

 really making me look at me and I am here to say….sometimes it ain’t pretty!

                    "Me" Paula Cole

Can't be my driving force!

A “friend” said they felt so much better than I had made the high tech changes yesterday, installing a video camera on the front door and keyless lock. She said she had been concerned about how much I was home alone and how much “safer” I must feel now….WHAT?  That had never occurred to me!    I tried to explain that these decisions were not about afraid of being alone they were all about me taking care of me.  The changes were made to get the GOOD IN, not keep the BAD OUT!

I know how easy it is for fear to take over my life and my decision making processes.  Fear is my “wolf blowing at the front door” all of the time.  I, like most of us, have been subtly trained to think this way.  We are all inundated with benign advertising but there is also the very obvious fear-based ads and politics. We seldom recognize our own fears being used against us to sell a service or product. It has just become the norm that our fear or more politely said….our safety is the only reason needed to justify any purchase.  Who could possibly argue with our need to be safe?  It is the universal green light to purchase anything for any amount of money! I do not want fear to ever be the reason I do or do not do something….especially something that will make my life more fun, more independent and more enjoyable!  

I realized that many of my past important decisions were made based on fear….not any more….not for me…All decisions, from here on out, are based on joy and how much pleasure they will bring and how much good I can let in.  Fear just cannot be a part of me anymore!  I have to remember and keep focused on “FEARLESS” as one of my “core desired feelings”.  I do not want to spend my life with fear being my driving force.  I want my driving force to be joy, laughter, and love!

"She is Not Afraid"  New Direction