Friday, February 7, 2014

"National Wear Red Day" For Women's Awareness about Heart Disease!

DON'T "Stall" JUST GO!!!!


My story is told by the very first of the posters below. I AM A SURVIVOR! Of NOT only ONE heart attack but I am fortunate enough to have SURVIVED TWO!!!! My first one at 40 years old and my 2nd on at 50! I HAVE NO PLANS of "repeating" that process again! PLEASE be aware that all too often the "signs" and "warning symptoms" of an MI for women are so much different than men. I know that is true. My "1st" one, the "warning" I had was my ankles swelling about 2 months before the actual heart attack. I gave it not much thought. I had made a mental note to talk to my doctor next time I went in. Then on January 9th, 2001... after 3 days of a mild "chest discomfort".... I gave my doctor a call... (after a dear friend in Malta threatened to call the ambulance all the way from Malta to Ennis TX to come get me, if I did not do something- and Thank God she said that and Thank God I listened)... I did call... thinking a diagnosis of "bronchitis" or could be a start of pneumonia... so when I spoke to the nurse... she told me to hold a moment... she came back and told me, I needed to stop whatever I was doing, and get to the nearest ER pronto! Well, I still was kind of like "yeah whatever"... here we go to the ER, for a bill I can't pay, and some antibiotics he could have called in.... so, I was ALONE... I got in my car, and drove with the flashers on... 25 miles to the "nearest ER".... and I got out of the car very calmly, walked in and said my doctor sent me because I was having some chest pains... they took one look at me... and rushed me through the doors, into a room... hurriedly getting me into a hospital gown, and quickly getting an IV started, doing a EKG, blood work, chest X-ray... and it was not long until the doctor walked in to tell me I had already had a heart attack, or were in the middle of one... and the blood work indicated I may have massive heart muscle damage. By then they had already given me that 2,500.00 injection to "stop" the heart attack... from causing more heart muscle damage.... talk about in shock.... I was in shock... I was taken the next day after I was stabilized to Baylor in Dallas... where they did all kinds of tests, the nuclear one, an angiogram, where I got to see one of my issues... a rare occurence... the artery coming into my heart was in a spasm... thus part of my issues was that. But, fortunately, I DID NOT have a great deal of damage... some but nothing like they expected. I had gotten to the ER just in time... another 30 minutes and things may have been much different... but I got the medication in time to stop the muscle damage, thus that is why my blood work showed such a very high rate of enzyme levels... not due to the damage, but due to the medication stopping the damage at just the right time!!!! 7 days later, I went home, no stents... with just medication for then.. and up until right at my 50th birthday... I was lucky enough not to have much issues with my heart... although as we have found out since then... I have RA, Lupus, Sjôgren's, along with some other autoimmune issues, that may have contributed to me having a heart attack at 40! I was "fit", walked 5 miles a day everyday or more, watched every bite of food that went into my mouth, was a a perfect weight... and was "doing" everything right... but don't let that fool you either... doing it all "right" still may not "stop" it from happening to you.... so, please DO NOT feel stupid... if YOU FEEL something is "off", or "odd"... you know your body better than anyone... and YOU have some "remote" feeling it maybe your heart... don't wait 3 days like I did! GO THEN to your NEAREST ER!!!! It CAN SAVE YOUR LIFE!!!! By the way, TAKE AN ASPIRIN... do that first, then go... don't stall, just go!!!! 






Wednesday, February 5, 2014

More Greats News on the Heels of Lupus and Autoimmune Diseases

Alliance for Lupus Research and Lupus Research Institute Partner with National Institutes of Health to Accelerate Drug Discovery in Lupus
Lupus Research Organizations Welcome Big Science Push to Drive New Therapies
for Lupus Patients
We are delighted to share that the Alliance for Lupus Research (ALR) and the Lupus Research Institute (LRI) have joined the National Institutes of Health (NIH) and industry in the Accelerating Medicines Partnership (AMP) launched today to speed new paths to treatment for lupus and autoimmune diseases.... read the rest at the link below......


http://lupusresearchinstitute.org/lupus-news/2014/02/04/alliance-lupus-research-and-lupus-research-institute-partner-national

Friday, January 31, 2014

Trying to Place "priorities" in the right spot! Difficult to do when you suffer a Chronic Illness

I just said that I was going to go "rest" and watch a movie with my dogs. After all, I am just barely a week out of "major surgery", even though laparoscopic, nonetheless, major anyway, as my Surgeon, Dr. Sullivan reminded me yesterday. I went in for my week recheck, knowing he would turn me loose to ride my exercise bike... Well, his answer was an emphatic NO! NOT for 6 WEEKS!

I gave him a bit of an evil look, and he began to tell me... okay ride that bike, incumbent or not, and when you come back, and those "mesh" panels have pulled away, the next surgery will be big incisions, and not pleasant at all. So, of course to the best of my ability, I am abiding by doctors rules... so today at least although windy as hell, warm enough that I made my 30 minute or so jaunt around our long driveway. So, I did get some exercise in. :)

And I realize he is right... if I did something stupid, and pulled what he has done loose, then the repair of that would be a much more difficult surgery, that would probably mean a hospital stay. I still can't fathom riding that stupid bike would hurt, but okay, I will behave for now.

I am still sore, still purple from my navel, all the way down to my thighs... yes EVERY PIECE of me, is "purple". I won't give the "details" but you can get the jest of it all, since the hernia's are right at the pubic bone, and blood travels downward, when healing begins, thus due to gravity, several "parts" on me that are not usually purple sure are now.

I had to laugh when I was telling him. He basically just came right out and said it, and I sat giggling and agreed ALL of me was bruised and purple!

I am just so disgusted with everything right now, I won't even begin to get into all that has happened in just a few short days... but I will say between the ignorant people at my insurance company, and the stupidity of the "billers" at the hospital where I have my infusions, along with (if I get another automated stupid Call from Humana I am going to scream)!!! I want to say to that recording, QUIT spending MONEY on these stupid calls and pay my damned bills! Of course they see "coding" is wrong, but rather than question it, they just pay it wrong or right... and even if they "underpay" or believe me I had them overpay a year ago or so, and called to tell them they paid for blood and lab work that DID NOT belong to me... 4,000.00 worth! And honestly, I don't think they cared... But they sure as heck care when "their" premiums aren't paid..

I spent most of my walk in deep thought today. In fact my husband said I looked almost upset... but not really at all. I am more in this place that I have to "split" my time. I desperately have to go allow myself to work on my book, and post more of my "own" stuff here on my blog. Not that what I am doing is not awesome, because it is. But, more along the lines of I HAVE to for my OWN SANITY get back to writing my book. No more of this waxing and waning... or feeling fearful... it is time to put that "foot" in the door, and go for it.

So, that is where my thoughts have been this afternoon.

Actually this morning, I just about have the "mini-manual" and all of the "Hubs" and sites set up with the correct permissions and so forth. I just hope they will be able to decipher my manual.

But, I HAVE GOT TO ORGANIZE and split my time up between my advocacy and my own blog and book. I have been so far out on a limb, with all of my new responsibilities with all of the Advocacy and Volunteer work (which I am THRILLED to do), but in between all of that, I've kind of lost my own "path" up the mountain to get my book written and published. Along with not overwhelming my blog, and FB page with too much of one thing, yet not nearly enough of "me"... which is why I do this... for YOU and for ME... so I have got to stick Rhia back into the picture as of exactly who I am, and not lose all contact of what my very real goal is... to write that book, and to have the very best blog I can.

While I walked... I talked... to myself. I have been faced with "one" reason as to why I won't start the first chapter... and "fear" is the only thing I can come up with is "Fear".... not sure what kind of fear, or what I am frightened of... but it seems fear holds me back from putting my eyes on the goal, and putting my fingers on these keys. As Natalie Goldberg says, WRITE...Write Daily... even if you fill notebooks full of crap, write it anyway.... and in my heart of hearts, I know that....

So, if I seem a bit "pre-occupied", or a bit distant over the next few weeks, I am in the process of mentally sorting out all of this. I want so badly to get that book written I can almost taste it. So, as Tiffany said today in a post on Facebook. I have got to put one foot down and the next one in front of it, or it shall not write itself....


I think right now must be a very difficult time of the year for many of it seems.... each person I come in contact with, is having hell on some level....

May be would should have named this Hell 2014!!!!

Monday, January 27, 2014

Please Come By and Meet Two More of Our Blog Leaders from IFAA's "Systemically Connected"

We have two more "live Facebook" chats this week, and both are going to be wonderful..

Lorna Krump and her blog "Life With RA is a Pain" will be on January 29th at 9 pm (ET) at the Facebook General Room for the IFAA! Lorna is just an incredible Health Activist, Blogger, & lady that lives with several different Autoimmune Arthritis Illnesses. Her blog talks about life with these diseases, and so much more! I know you will really enjoy hearing Lorna!

We also have Polly, "Pollyanna Penguin's RA Blog" as she tells about her life with RA, and also gives us more details on her award winning blog! Drop by on January 28th at 3:30 pm (ET) to hear her live FB Chat!