The Best Laid Plans...

There are so many things going on while I'm here in Oklahoma... a friend that was loved dearly by one and all in our Meetup group has died - from what I gather is suspicious circumstances (we are waiting for the medical examiner's report... THAT'S never good any way you look at it) and I am deeply bothered by this. He was ALWAYS upbeat and happy and thought of others long before he would consider himself. That always set off bells, lights, and whistles in me, but that's just my way of thinking. Anyway, recently I suggested to him that we start a book together of gratitude for our particular Meetup. I was serious about it but had been busy with another "situation" in my life and had not gotten back with him about it. Now, I don't blame myself (if it comes to anything like that) for something that might have happened, but it gives me pause to consider what this man might have been going through... those are just my preliminary thoughts. Again, we are waiting on the medical examiner's report. Namaste my friend, David.

My "other situation" has been with an 18 year-old who aged out of foster care and was on her way to a new life. That new life didn't work out and I was doing my best to help her, and protecting my own self at the same time -- knowing full well that situations like this can be risky in more ways than one. Let's just say that no good deed goes unpunished and I am "persona non grata" in her life now. So be it. I am not a parent, though, and am not used to these feelings of betrayal and watching someone make HORRIBLE choices knowing full well what awaits them. I mean, I have nieces, but my nieces have made pretty good choices, and I am still in touch with both of them (THANK GOD!!!) and I think they both still want me in their lives (I hope it stays that way). I was SO unprepared for the hurt I felt. Without the help of the General Manager here at the hotel I don't know where I would have turned for solace. Talk about above and beyond the call of duty... LOL I am emotionally in her debt, and I know the Universe is watching out for me.

I am loved, and alive, and so lucky to be me and have the intelligence, the upbringing, the friends, all the things that have come together to make me who I am -- including all the bad stuff. That's made me able to understand some of this better than I would have been able to had I had a "gifted" life. I learned a new saying today from a friend here: It is an old Asian saying: "May you have an interesting life." Ahhh, yes. I think I can say I have had an "interesting life". I wouldn't have it any other way. LOL

Guest Blogger: A Post I MUST Share: "Life in Pain: Living with Complex Regional Pain Syndrome CRPS: I wish I had cancer..."

I am compelled to share the post below.  I found it on the Facebook page "Chronically Optimistic:  Invisible Illness, Visible Hope".  I, too, have the diagnosis of Chronic Regional Pain Syndrome and the usual "story" that goes along with it.  The term is a mouthful so I don't use it often.  I prefer chronic, or intractable, pain.  In most states there is what they call an "Intractable Pain Law", though it is rarely enforced. In fact, in Florida, there is a law on the books that directly contradicts the intractable pain law.  Our attorney general is a republican right now and trying to make controlled substances illegal (no, I'm not kidding) so guess which one is being enforced?  I bet things would be different if SHE had chronic pain.

MY STORY
It is beyond me how pain can last so long after an operation; on some days it feels like it is the day after.  My pain doctor has to explain to me, each time I see her it seems, what is going on in my body and causing that chronic regional pain.  She patiently lists my options again and again, and I shy away from them, again and again (my pain doctor is a gift from God, and she is constantly at the top of my gratitude list).  Then I go on with the pain patch and medication I am currently using.

The surgery that caused my pain actually took place at a cancer hospital, so I have also known the feeling of wishing that I had cancer.  I even said that exact phrase right after my surgery when they discovered the spot on my lung was not cancer.  If it had been cancer I would have continued being treated like the queen I was at Moffitt during my surgical stay.  The minute they got the biopsy results, however, they began to treat me as the "ugly step-child".  Even the respect which I had been treated with as a hospital patient the day before was withdrawn due to the lack of cancer diagnosis.  You think I'm kidding?  My surgeon disappeared...  I was only visited by the surgical associate.  After I was released and called to ask why the pain was so intense the nurse wouldn't put me through to talk to my surgical team; she wouldn't even take a message for them to return my call.  Not even the referring pulmonary oncologist would return my phone calls.  When time finally came for me to see the pain management team in oncology they outright refused to treat me even though I was right there sitting in their office.  Why?  I didn't have cancer.  Period.  End of story.

I felt so alone.  In most of my life challenges I had friends that had been through similar experiences; enough to be able to lend emotional support at least.  During my divorce I could turn to the plethora of friends that were divorced and, let's face it, most of my friends are divorced.  When my parents died there were a handful of people that had already lost their parents and they were a great comfort during that time.  But with the pain that had been hanging on for months and months and months and months?  There was no one.  And even fewer who could understand losing half a lung.  Pain literally ran my life.

There were precious few days I felt like doing anything but doing the bare essentials of taking care of myself.  And when I did feel like being with friends, if I mistakenly talked about what was going on in my life (doctor appointments, acquiring pain pills, new ways to fight the pain naturally, improvement in my pain, insurance frustrations) my friends would hit the roof!  They just didn't want to hear it.  What most people didn't know was that I was sleeping anywhere from twelve to 20 hours a day.  I literally had no other activities to talk about.  I could have named the dust bunnies under my bed and recited those to them but that might have convinced them I was crazier than they already thought I was.

There is one last thing I must report on this subject.  I finally received my diagnosis of cancer.  For some obscure reason, having cancer is the only way to qualify to receive certain controlled substances severe pain.  I am currently being followed by a pulmonologist for suspected cancerous nodules in my left lung.  Thus I have gotten my wish; the cancer diagnosis is mine.  Funny, I still can't get the pain medications I need.  The Attorney General of Florida is making sure of that.

A lot of judging goes on as the article points out.  Judging from doctors, pharmacists, friends, complete strangers, all facets of life.  The statistics are listed and it's worth the read to realize what people like us are up against.  You, too, will understand why so many of us with chronic pain wish we had cancer.


Life in Pain: Living with Complex Regional Pain Syndrome CRPS: I wish I had cancer...: I know it sounds weird, but I wish I had cancer instead. Cancer is this big bad that everyone now worries about.  But cancer has a f...

Surviving

I've been reflecting on people referred to as "survivors" and the traits peculiar to them as opposed to others not necessarily labelled as survivors. Those people that exhibit a gift for going through life challenges that, on the surface, daunt others. Those individuals that live through things most of the population never have to deal with; who face difficulties that seem horrendous and come through them seemingly unscathed -- ready to face another day. What is their motivation to survive? Where does their will to overcome these challenges come from? Is it mere habit? Are they just old souls that don't know any better? Have they been reincarnated so many times that it's just all they know to do? Have they been given a special gift? Do they love life more than the rest of us? Do they have loved ones that couldn't live without them and they live for them? Or can they not live without their loved ones and they survive to live another day with them? What if they aren't really tied to anyone? What then? What do THEY survive for? Do they survive just to say they survived? Is it in the genes? Is it hard-wired into them? Maybe it runs in families, in certain types of personalities or in the birth order. Or in how many tragedies they have witnessed before the first life challenge presents itself... and they have had time to think about the nature of tragedy and how it unfolds.

Tragedy unfolds one simple moment at a time... it doesn't unfold all at once. Some moments are more horrific than others, some moments hurt more than others, but it only lasts for a moment, then it's over. Another moment starts and takes the last moment's place and it's not quite as bad... or it's worse and you laugh because you thought the last moment was so awful. You just have to hold on then it's over, and you can start again in the next moment. Maybe that's it; when you've seen enough tragedy -- when you've had so many challenges that you understand the nature of tragedy -- it becomes YOUR nature. You just figure it out. You know that moments don't last forever; only forever is forever.

Hello, It's Me...

If I were to describe my life to you now and compare it to my life of two years ago you might doubt it was the same person.  LOL  Many dreams have come true over these two years, many life experiences have taken place that naturally do in life, and then some experiences have altered my short term plans in a big way.  I'm at a point where I need to...  RE-ALIGN is the only word that is coming to me.  Huh...  I like that.  Re-align with the Universe.  OK.  That works for me.  I labeled my illness and resulting lobectomy and surgeries "Debi's Detour".  I think this can be the "Realignment".  Oops, gonna have to Google "re-align" and "realign".

I'm tired, I'm in pain, my brain fog is overwhelming right now (to the point of scary), and I have so much work to do to prepare for homelessness.  That's a lot of things to bring into alignment.

Yep.  I like that term.  I need to realign the negative perception I have about my recent experiences with the serenity I found through the trials of those experiences.  Through meditation, serious study and contemplation I was able to find my peaceful place; my "go to" place, my Nirvana if you will.  It happened during the process of the second surgery in February 2013.  I had an overwhelming feeling that I wasn't going to make it through that, and at some level I still believe my time is ticking by quicker than it was before - and that's one of the things I need to accept.  I have come to understand that I cannot get back to living without acknowledging that I am dying.  Several times I thought I had accepted death, and maybe I did.  Or maybe I just gave up...  I mean, when you're comatose the thinking process isn't very sharp.  I don't remember being aware of much during that time; I was in and out of consciousness.  I had an understanding, though, that I was going to die if Dr. Miller couldn't figure out what was wrong.  He did though, obviously, and I IMMEDIATELY moved on to the next (simultaneous) crisis in my life -- my divorce and the death of my Father.

A big positive recently; I have found a sister from one of my prior lives.  I was a mermaid [SHOCK! -- Alert the media!!!] in a prior life, but it was a life I lived very long ago, indeed.  I mean eons.  We were very close sisters.  Her name was Clarissa, mine was Emily.  The night we realized this was incredibly emotional, to say the least.  I'll blog about that another time.  It's just so validating when you recognize someone, and they recognize you, from one of their past lives and immediately knows who you are, what you are, and loves you.  I just kept saying, "I FOUND YOU!  I FOUND YOU!"  People thought we were nuts.  No.  I'm pretty sane.  Just "re-aligning", thank you.

Namaste, my friends,

Your Mermaid