Lemonade

I managed to go outside for a few minutes the other day and these are the roses that were still hanging in there.

Hi y'all.  Yes, I'm baaaack - well, sort of.  As many of you have suspected, I've had problems galore, health issues, in some ways just about every sort of issue you can imagine.  I can honestly say that this is the second worst "period" of my life.  Understand, I'm so old that I was in high school when man landed on the moon.... a very LONG time ago indeed!  This is such an awful period that there is no choosing "was this the worse or was that the worse?"  No. This is the 2nd worst thing by a country mile. Period.

Now here's something to fear in a haha way.  I have had some wild "adventures" while I was gone: like ER insanity and so forth.  In fact, so much has has happened to me in the past five weeks that I feel as if I have enough material to write posts for at least a month.  Well, a month-full if I didn't forget so much and could muster up the energy. ;)

I also know that I need to get back on that horse of mine (metaphorically speaking, of course - I don't actually own a horse) and just start writing.  In the part of my brain that isn't full of fear and despair I know that life goes on or it doesn't, all dependent on fate or on a Higher Power.

(Pretend there's a transition here, please!)  

I must thank my readers here for all the support I've received.  I've only ventured to twitter a few times (missing everyone!) and have been  brought to tears for all the support and kindness I've received from quite a few of my twitter family.  Thanks so much.  Your words of encouragement, support, just letting me know you're out there PLUS the many prayers I've received have been more helpful than anyone would believe.  I hope no one ever has to go through such grief.  I still need many miracles but I don't see it happening.

So, thank you blog world, ipad, computers, email and the other social media out there.

If we had to have the DD: CFIDS/CFS/ME and/or fibromyalgia, we've gotten this monster at a pretty good time. We have:

• medications that help somewhat
• no matter what the time or day, there's always someone on the other side of your state, country, continent, who is there.  We can cry, we can act silly.  But we also have those who understand this the hard way.
• We have friends who've come back into our lives after decades and they have been so supportive. (I have GOT to think of another word for "supportive"!)

I want to and am so tempted to write a list of names to thank those who've been here on this blog (and had the energy/courage to makes comments here), on Facebook and on twitter but there are so many and I'm so afraid that I'll leave someone out.  But please know that you are in me and you are helping to alleviate what I'm going through a bit.  It all adds up in the end and you hope and pray that it's enough.  I'm way behind in my connecting with those who were and are there for me and ask you to bear with me.  

Finally, I'm taking one day at a time.  I'm still falling.  In fact, I just fell off my chair about 5 minutes ago, misjudging where the chair was.  Good thing I love my bathroom floor - generally speaking.  We've got the beginnings of a beautiful friendship.  In human terms I'd say that bathroom floor and I are going steady and who knows where that could lead!

At any rate, I'm still living with a migraine (both head and body migraines) that won't leave me, the orthostatic intolerance is almost unbearable, the eyes are doing weird things to me, the myoclonus is almost out of control.  Oh good grief.  We can be here all night if I start listing just some of my "minor problems," so I'm calling it a "day." 

Fear not: there are a few laughs coming up in future posts.  Just working hard to make that lemonade, folks.

As always, I hope everyone's doing their very best - only better!  Ciao and paka.


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A Request...

Lately I've had more than a few people on twitter who have approached me about various aspects of healthcare, whether they be about my view of what I think should be done about a particular matter or my information as a "co-victim" or any number of other issues regarding health.  Normally, I enjoy "hanging out" with my twitter family, but lately I've found it a bit unsettling because of the advice factor.  

I love sharing with friends and getting to know people (not necessarily in that order) and I admit that I feel honored that anyone would want to know something of any substance from me.  But the other side of that double-edged sword is that at times I don't feel comfortable about some of the questions posed to me. 

I know that this might sound rather hypocritical of me when I have a blog dealing with CFIDS/CFS /ME and fibromyalgia and  touch on any number of other issues.  I have, however,  made it clear that I'm not a doctor. Furthermore, if you recall my vocality about how it makes me uncomfortable that doctors are on twitter, think how uncomfortable I feel talking too much about information as a fellow patient, though unlike a doctor, I don't have "better" things to do!  But I do try to let you know that the things I talk about are information, generalizations and my own life experiences.  However, things have become so uncomfortable of late that I thought it was time to state my feelings about twitter and make a request.  First the problems with twitter comments/questions.

• As already stated, I'm not a doctor, and don't want to give out medical advice, only saying things like, "this is MY experience," blah,blah, blah," or I've heard this, read this.  Furthermore, I do have my good sources.  However, a doctor I am not.
• I've said often enough that I'm techno-UNsavvy and half the time I don't even know where to find questions, resorting to my email account to find messages to me.  Sad, I know!  But old dog, new tricks... you get the picture!   Half the time I'm afraid I'm appearing rude because it takes me forever to find things addressed to me, or because I don't put hash marks in correctly, and so forth. I'm trying to get the hang of twitter, but talk about ulcers!
• To complicate issues, there are only 140 characters allowed for any tweet.  Do you see how long my posts are?  Is there anyone reading my blog who thinks for a moment that I can answer any question in 140 characters or less, much less complex questions?  Good heavens, half the time I don't even know what the person on twitter means at all, or even which post someone is referring to.  I know I must sound even more idiotic there than I do here! 
• With twitter, answers need not only be short but thought out, quickly.  With my comments here on my blog I usually read a comment and give myself a day to allow the reader's comment to gel.  I have Fibro-brain, after all.  We are most certainly not quick on our feet!
• Furthermore, to put things bluntly, I will not engage in a p*ssing contest!  Sorry for the vulgarity but that gets the point across most succinctly.  On this blog, I let comments come through and except for obvious spam (for Rogaine, etc.) I let comments through uncensored.  On twitter, I'm not sure I even see everything addressed to me.  However, I am not going to get into a "debate" with someone on here nor on twitter if I make a comment and circular reasoning is given as a retort.  Frankly, I could care less!  I know when NOT to kick "gomno."  My mom taught me the principle when I was a kid.  You kick it and it will smell and get all over your feet.  It's not worth the effort because for some people nothing will ever be enough, they will simply go around in circles: a little like Omarosa on "Celebrity Apprentice."  Who wants to argue with her?  She is not worth anyone's time and energy.  (Except for "The Donald," perhaps.)
• Finally, a little bit of respect is appreciated.  I had one person ask me which medicine I'm taking for something.  No "please," no "would you mind sharing," or any of the niceties that our moms or kindergarten teachers taught us at a young age.  Just "what medicine are you taking?"  As I've stated before, I do have a private life and there are certain things I don't discuss.  Furthermore, if I get to know someone, I may feel more comfortable about mentioning what I'm taking and other such questions.  But to make a "demand" without a please or introduction?  I'm not playing that sort of game at all.  No one should have to either! 

So, I have a request.  You know I love feedback and comments.  I absolutely love them.  But please, if you want to discuss an issue, make that comment here on this blog and not on twitter.   For all the above reasons, there is just no way that I can even begin to comment on some of the issues when I get a 140-character message, which is complex and often incomprehensible - and be expected to answer back in 140 characters. For those who are unable to comment here, because of whatever computer problems, my Facebook page is another way to go - at least there we have more than 140 characters to put across a thought. 

I have no problems with anyone asking me if I can cover a certain issue or suggests a topic for me to address. If I can do it, I'll do so.  Or, if a comment to you is too long and complex, I can write a post as a reply, as I've done on at least one occasion.  But twitter is just too much for this old bag... in fact it's too short for anyone when it comes to serious and complex issues.

Sorry, but it's the only way I can see myself as being responsible.  And I know that some of you who have been extremely wonderful in the way you've asked me things, will immediately think that I've got you in mind, and that's not the case at all.  Passing the time of day, so to speak, is fun.  Being supportive of one another is wonderful.  Laughing together about silliness is a joy.  It's just the rest that becomes a problem....

As always, I hope all are doing their best, only better.  Ciao and paka!