Coping with Loss - Life changed by Autoimmune Illnesses, & all kind of other health ailments, complications, & the thought of a chronic illness taking your very life away...

Over the past several years the subject of having autoimmune illnesses, along with my other health issues.... many of them due to the AIs... a voice sometimes brings up the loss we suffer when the very life we have made is jerked out from under you.

You begin to research, to see specialists, to try medications that can have as bad of side effects as the disease themselves do... you know that once you find out that your total immune system has been hijacked by these horrid diseases, your chances of survival becomes less.

We ALL have times we think about dying... passing away to move from this world into another, whatever you think that may be for you...

Whether you have a brush with death from a bad accident, from another disease, such as cancer, diabetes, or possibly some other issue from Mother Natures storms, to those who choose to walk into a public place and open fire on unsuspecting individuals, or crash planes into buildings, that would just as soon blow themselves up in the name of their religion... there are many ways that some of us may face whether our time is up on Earth, and feel that near death experience is often a wake up call, for us to do something different in our lives.

I have encountered more of these, than I care to admit actually. A 4-wheeler accident at 25 years old, nearly within inches as I centered the front of a car, and I went completely over the top of that car, after my mouth hitting the hood ornament, and for fortunately the momentum threw me completely on the black top behind it and not through the windshield... or I would have never made it...

Then at age 40, I suffered a heart attack, that at first the doctors thought caused severe damage to my heart muscle, and it was not until I was transported to Dallas and had an angiogram, was I told I was extremely lucky, that there was very little damage to my heart... and


in 2010 after a night of being suddenly so extremely ill that I literally could not walk, and throwing up green bile... having a gallbladder removed, which something went terribly wrong and I had to spend 6 weeks in a hospital in Dallas, and at the time again, they were not sure exactly what was wrong.. I was in and out of surgeries several times, and supposedly one issue with a cut in one of my bile ducts. It was allowing toxins to pour into my abdominal cavity, thus again I was just meant to still be here, because I finally did get well, yet before I left that hospital I suffered a 2nd heart attack. Due to all of the stress emotionally and the toll my body had been through, the felt it was more from an artery in spasms, and I have so far not had to have any type of stent etc... all so far is being treated with medications, for which I am grateful.


Till this day, even my own Primary Care Doctor tells me, that I certainly was meant to be here, because he feared for my life when all of that went down. Now, with the Lupus, RA, Sjogrens and so forth, along with medications such as Predisone, Biologics, and my other health factors, if I allowed myself to, I could bury myself under neath my bed, and not face life daily.

So, a couple of days ago, I was listening to the radio while running errands and Tim McGraw and his song, Live like You were Dying ... came on... I have always loved that song and it hit me after the ordeal recently with the cellulitis, so many antibiotics, the stomach and intestinal whoa s I have been through, along with the concern over my own need for lower lumbar/sacral surgery... and of course knowing these AI illnesses, along with my other health issues leaves me many times over of becoming ill with something that could take my life in an instant... my Rheumatologist has reminded me more than once my chances just due to the RA of having a heart attack are like 50% more than a person without RA.

I have a dear friend, and she is suffering after being cancer free for over 30 years (she had cancer while we were still in high school and beat it), it has case back and has truly shook her to the core...  things for her truly have been a great deal like my own, with those people you had come to county on, suddenly just walk out on you... when you need them the very most.... and even with someone there you still feel frightened by the what if this, that or the other...

I also find myself, as well as many others, not wanting to talk about the subject - of course it is human nature to hide those feelings and try to surpress those horrible thoughts, yet they have a way of creeping in and I have found my own best way is when it comes up in thought to myself, I must work it all out and not try and ignore the facts... facing all of the possibilities for me has been a long road, but it has truly helped me to learn to deal with those nights I wake up drenched in sweat, crying out, and jumping up for night terrors.. plus for myself the more I try to keep it under wraps the more I find myself overly stressed and making myself almost ore physically ill.


So, what is the point of this post? For one, due to the complications of myself at the moment, and all that those medical issues cause, along with the concern over my Mom her back problems, and getting her the doctors and proper treatments to relieve the pain is has... I do better putting either pen to paper, or fingers to keyboard I guess you could say and writing about it... it helps to purge those feelings, of course they certainly will pop up again in the future...

Plus I DO WANT others to realize being frightened of dying, or feeling like your life could be taken away - way to QUICKLY when you still have so much more life to live is difficult to deal with.... so by my own posting of this, I hope to help others to get in touch with the reality of one of these and/or other chronic illnesses taking you away for good from your loved ones... and working through those feelings...


Here are the lyrics to Tim McGraws song....

"Live Like You Were Dyin'"

He said I was in my early 40's,
With a lot of life before me,
And a moment came that stopped me on a dime.
I spent most of the next days, lookin' at the x-rays,
Talkin' 'bout the options and talkin' 'bout sweet time.
Asked him when it sank in, that this might really be the real end.
How's it hit ya, when you get that kind of news.
Man what ya do.
And he says,

[Chorus]

I went sky divin',
I went rocky mountain climbin',
I went 2.7 seconds on a bull name Fumanchu.
And I loved deeper,
And I spoke sweeter,
And I gave forgiveness I've been denying,
And he said someday I hope you get the chance,
To live like you were dyin'.

He said I was finally the husband,
That most the time I wasn't.
And I became a friend a friend would like to have.
And all the sudden goin' fishing,
Wasn't such an imposition.
And I went three times that year I lost my dad.
Well I finally read the good book,
And I took a good long hard look at what I'd do
If I could do it all again.
And then.

[Chorus]

Like tomorrow was a gift and you've got eternity
To think about what you do with it,
What could you do with it, what can
I do with with it, what would I do with it.

[Chorus]
Sky divin',
I went rocky mountain climbin',
I went 2.7 seconds on a bull name Fumanchu.
And I loved deeper,
And I spoke sweeter,
And I watched an eagle as it was flyin'.
And he said someday I hope you get the chance,
To live like you were dyin'.

To live like you were dyin'.
To live like you were dyin'.
To live like you were dyin'.
To live like you were dyin'.

I am not quote sure exactly what point, if any that I am making as far as my readers. At the moment, a part of this posting is for myself... facing my own mortality issues, facing that my last living Aunt, could pass away at any moment, yet that is with all of us... we could be in a horrible accident, or be struck down by an emergent health problem, a stroke a heart attack, an embolism...

We could walk into a shopping mall, or a movie theater, or into your local Wally World, and someone decide to bomb it, or open fire on us, the innocent ones, even at church, it seems no one is safe anywhere, anymore... Our world is and had been tested, our nation tested and tested again... from strange and new diseases, from MSRA and bacteria that are resistant to all medications we have now... we could be gassed by something dropped into our air, or in our water... we could have a plane fall out of the sky, or a local lethal business, such as a chemical warehouse, or other flammable place catch fire and explode to rock a small town or a huge city... each day we face the fact that something could happen and so many horrible, unspeakable acts have happened over the last several years... and they will continue to happen... those who should NEVER ever own a gun, having them in their hands and putting us at their mercy...

kSo, my point for myself.. is to do the very best I can to live my life, like the next week, the next day, the next hour... the next moments could be my last... to feel prepared for the unknown... for the time, I am called upon... for the moment, I have completed my visit here, and move onto a place perfect, without hatred, without stress, without want or need, without greed, without hunger, where everyone is totally happy, and everyone loves everyone else... so for you.... and me.... think of things you might do to Live this Life as we know it, Like we were dying....

RA and The Chance of Heart Attack Doubles with the Disease

Study: Rheumatoid arthritis nearly doubles risk of surprise heart attack - Since I've has 2!!!! Already One at 40 and another one at 50- I don't want a repeat for sure. My first one at 40 years old, my doctor told me then my chances of surviving a 2nd on were not good at all. So happened I was in the hospital in Dallas when I actually had the 2nd one. Or I may not be writing this today... my Rheumatologist always reminds me of just how high my chances are since I've had 2 already and now to have RA, Lupus and so on, that makes my risk extremely high... I do all I can to "help" avoid one. But, that was how I was BEFORE the first one! I was only 40 years old, I was in great shape, walked 5 miles daily, along with other types of exercise, I ate as healthy as anyone could, my cholestral was not high at all, my blood pressure was under control with medications... so you would have thought I would have been the "poster" person for NOT having a Myocardial Infarction. Yet, I did. My doctors back then had not discovered my Autoimmune issues. Had they known, they may have blamed it on that. But it was another 8 years before I was diagnosed with RA, Lupus etc. My 2nd one, at 50, I had been extremely ill. In fact, we just talked about that a day or so again. The doctors here and in Methodist hospital in Dallas, never really KNEW What was "wrong" with me. They blamed it partially on a nick in my liver from a gallbladder surgery I had in Ennis. But, then they kept telling us that I had a "collapsed bile duct"... whatever was going on "poisons" from my system were literally pouring into my abdominal cavity all around my internal organs and so forth. I continued to get more ill by the day, and after SEVERAL surgeries, they had hoped I was out of the woods, and improving. I went for over 6 WEEKS that I could not eat one bite or take a drink of anything. They had me on a liquid "nutritional" bag of "white liquid" and that was my "food" for weeks and weeks. About the time I began to be a bit better, and more able to be "coherent" - they were trying to send me home with all of these tubes running out of my side and I was not even able to really eat yet... so I got what they thought so totally "heart broken" over being so ill and feared coming home at the time, it caused a 2nd heart attack. Fortunately, I've avoided any type of surgery and I don't have any stents at the time, so far. Medications continue to control it, but believe me there is not a day that goes by that I don't think about "what if".... so never take any symptom pf an MI lightly. Even if your "young" 30's or younger, it can happen.....


http://www.news-medical.net/news/20150505/Study-Rheumatoid-arthritis-nearly-doubles-risk-of-surprise-heart-attack.aspx

"Go Red For Women's Heart Association" Today is the National Wear Red Day!

https://www.facebook.com/goredforwomen?pnref=story

PLEASE TAKE A MOMENT TO SHARE THIS OR SHARE YOUR STORY AND SPREAD THE WORD ABOUT WOMEN'S HEART DISEASE!

IT MEANS A GREAT DEAL TO ME, SINCE I HAVE LIVED THROUGH 2 HEART ATTACKS... ONE AT 40 YEARS OLD AND ANOTHER AT 50... AND I SURELY DON'T WANT A REPEAT OF ANOTHER AT 60 IN A FEW YEARS!!!

Sjogren's - Heart Attack? Severe Dental Caries!

      Sjogren's Heart Attacks & Severe Dental Problems 

 This is something that really shocked me this morning. Due to having Sjogren's as well as already having not just 1 but 2!, Heart attacks I truly wondered WHY there is NEVER much talked out, put in the news about, or for the most part NONE of my PC doctors RARELY if EVER mention it during a visit. I began being very concerned as to why, since I have some really "severe" symptoms, that honestly I feel have been "swept' under the carpet by the medical profession! So, I have been the one who "researches" about Sjogren's, how it effects us that have it, and sometimes having it as a "primary" autoimmune arthritis illness, rather than a "2nd" that goes along with another AI such as Lupus, RA, and the like.

Know the Facts:   http://www.sjogrens.org/

I ALWAYS go in with the "latest" on medications of I have it, from the RA, Lupus, Sjogren's... and so forth. And believe it or not, several of my "suggestions" on what my "research" tells me, I may very well get some positive results from something. IT is the TRUTH, that had it not been for my "Own" research, and "self-education" I would never have been on the Latest medications called "Forteo" which is for osteoporosis. Mine is so BAD, my numbers are practically "off the scale". When I told my Rheumy about it, he immediately said you are a perfect patient that will get benefit from this. It actually does not just "strengthen" what "bone" you may have left BUT it actually helps your body to "re-generate bone"!!!

I have several including this Sjogren's mess. I began to dig, Google, read, ask questions, and try to fine out about it. SJOGREN"S'S si NOT just a case of "dry eyes and mouth"! IT causes your body to NOT be able at all to retain moisture of the mucus membranes throughout the body. So, this is not just a "dry eye and mouth" issue, it can turn into a very serious autoimmune disease issue, causing fatigue, low grade fevers, severe dental caries (rapidly) that must be removed because of the way it effects the teeth. Rather than like a "regular" cavity that begins on the outside of your tooth, Sjogren's begins deep inside the tooth. So, by the time you really know there is a problem that tooth or those teeth are already too far gone to be "repaired". I went with this diagnosis, as 2nd to Lupus, RA, Raynaud's, & a whole host of possible AI illnesses, yet u until about 9 months ago did I begin to suddenly have very severe cavities, that were already bad enough to have eaten holes too large to fill! Many of them would break off at the gum line even if I were not eating anything you might think would cause this. It started with one, and within 6 WEEKS, I had 3 pulled! It just kept getting worse. My fear was that there would more to follow, Just as I expected, after a "panoramic" X-ray of my entire mouth, MOST of my teeth are already too far gone to "repair". The very "few" left, could also begin at any moment, leaving me with NO teeth! It has literally frightened the hell out of me. Here I am, 54, and that is not that old, and my teeth are breaking off & having to be pulled frequently! So, I began asking my own dentist about alternatives, especially with the Sjogren's, and I was told by several, along with my own research, that regular "dentures" would probably not do well, due to the dryness of my mouth. The dentures would not be able to make a kind of "bond" well & they may not stay in place. So, I found out about the "mini implants", of which I am supposed to begin having put in. The procedure takes several months. First of all, it means pulling ALL of your teeth, then making sure the jawbone is healthy enough, and that you have enough of it to "hold" the little "gripper like" metal stubs they put in usually in 4 places, two upper and two lower, that will "snap" the final dentures into place and hold them securely. But, this takes months to accomplish AND it is certainly NOT CHEAP!!!!!

I have went to three dentists, and the estimates vary greatly. I had one that told me it would be something like $15,000!!!! I had another that was a couple thousand less, depending on the bone etc. Then another one told me $8,000,00. Well even that is astronomical, as far as "cash" pay out of pocket! Even though I could fight with my insurance to pay possibly to pay 60%! But that still leaves me 40%! And in order to have my health insurance pay for this, it takes the dentists helping to get something in writing, with diagnosis codes that indicate this is a "health related chronic issue" NOT a dental problem in itself. It is caused by the disease in other words. Well, it also means finding a "true" ORAL SURGEON! This is where I ran into all kinds of red tape and dispute. I come to find MANY dentists now "call themselves" oral surgeons. They take special classes over and above some dentists regular schooling. Those types of classes give them a "certificate" of being able to "do" oral surgery, thus the implants and so forth they can do. BUT, if they are not "fully licensed, fully fledged Oral and Max licensed by the state, before they are considered a "full Oral & Max MD". Of course I have found both, and many I find are the "1st kind". The "say" on the phone, on their websites & in their ad's they do these procedures" BUT they cannot help to give you a form that you can file with your insurance company to get that 60% paid back to you. I've been through phone calls, "so called free" consultations (watch that, it can come back to bite you in the butt), & I saw the "words Oral Surgeon/Surgery" & it is NOT what you need in order for this "chronic medical condition" to get considered a "health problem". Without that or without any type of dental insurance or health insurance. So, you are stuck holding that very outrageous bill, knowing your choices are not many, & trying to figure out how the heck you are going to suddenly pull anywhere from (I even read $25,000.00) yesterday - to $8,000.00 and so forth out of your butt to pay for this!

Fortunately, there is now a "medical/dental" Credit Card, called "CARE CREDIT" that is just like any other credit card. You apply, if they accept, they send you a credit card to use especially for medical/dental issues. And if you pay the procedure out by that allotted time. IF not, you pay monthly payments with interest just like any other credit card. Now, this is definitely a "God Send" for many people. For one, I believe it being something that your dentist can help with, as far as getting you enough "credit" to get a procedure placed on the card. And it is strictly for medical/dental purposes... and I "think I found out things like elective types of stuff such as face lifts, breast augmentations, and so on.

Still even though this "pays" your dentist, you are still going to have to shell out the money in big chunks or monthly installments.   

As you read at the URL below, about Sjogren's and think about just how it, as an Autoimmune Arthritic Illness has been shoved under the rug as I said earlier, I will say for myself, it has been a very "earth shattering" experience for me. I am terrified of having ALL of my teeth pulled!!!!!! YET!, they are cracking, breaking, chipping and falling out a a rapid rate anyway, my choices are slim to none!

AND trust ME, I surely do NOT have that kind of "cash" laying around to just jump into that reclining chair, have a bit of "laughing gas" put on & get all of your teeth jerked out... then spend another 120 PLUS days awaiting for those implanted posts in the jaw bone to properly heal enough so the dentures can be attached and unattached and remain strong in the jawbone.

I urge all with Sjogren's whether primary or 2nd to one of the other AI illnesses, to do your homework on this. I feel many of us have been "left in the dark" way to long on this chronic disease. AND NOW what is EVEN WORSE, we find out that this illness can also have a HIGH chance of causing us heart attacks on top of everything else.

Below is the MedPage URL:        

http://www.medpagetoday.com/MeetingCoverage/EULAR/46302?utm_source=cardio-meetings&utm_medium=email&utm_content=mpt&utm_campaign=DCH

"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!!!! 

"Black Box" Warning - Certain "Fluoroquinolone" Antibiotics! IF taken too close together... can certainly lead to serious issues.

When what seems "NORMAL" may NOT BE Normal At all...

Like many of us, with or without Autoimmune Arthritic Diseases, we have the occasional "infection". Lately, it seems if you don't have the flu, then you certainly have some type of throat, lung, ear, and so forth "infection".

It has sent many of us to our doctors, for several reasons. Either we feel it is the flu, so we go to try and get "Tami-Flu" in time to "curb" the severity and length of having the flu. Or we stay ill so long, have fever, show signs of infections, especially lately seems like everyone has a bad cough they just can't shake. So, off we go to the doctors office.

Well, like many our home has been "ill" now really since right before Christmas. My husband came down with what seemed like the flu. Yet, he did not have "all" of the what I would call normal flu symptoms, and his cough was very bad. Fortunately, I had "left over" cough meds, had Mucinex, some antibiotics that I knew he could take, bought some medicated Vicks rub, kept him AWAY from me, and I was continually spraying, wiping, cleaning... using antibacterial everything, everywhere, because I certainly did not WANT OR NEED TO COME down with any of it. It took weeks, but right about the time New Years rolled around he seemed to be feeling better, although the cough was lingering. I felt he brought had bronchitis, thus the lingering cough, etc.

Well, I guess it was probably New Years Day, when all of a sudden I began to feel "stuffed up". I had just been to my doctor for a follow up  visit on the 27th of December (and my Doctor was still sounding hoarse, he did already have the flu himself)... I was quite leery when I found that out. Anyway, I got the usual injection of steroid for the Lupus flare, 14 day step down dosage of predinsone, and went on my merry way.

As I said above, I noticed New Years Day, I felt kind of lousy. It was surely NOT from any partying from the night before. since we were at home, with the two dogs, trying to stay awake long enough to watch the "ball drop" from Time Square. I began to notice I was feeling kind of "chilled". I did not seem to have any fever, but I was just chilled. As the day continued, I just felt worse.

I began the coughing. Since I already had just seen the doctor like 4 days before, I called told them I needed some antibiotics... felt like I may have a throat or lung infection starting. So, he called me in some antibiotics, cough meds, and I picked those up and began that. This was "Levaquin", the antibiotic. I am sure any and every one of us that has an allergy to any type of "penicillin", has had Levaquin before. It happens to be in the fluoroquinolones family of antibiotics. I had been prescribed it before, so I was not concerned over side effects and so forth. I picked it up and began taking it. Well after 5 days rolled around and I not only was I NOT better, but almost felt worse, I called his office again. I told his nurse, that I felt like it was "moving" into my chest. So, later in the day, I get a call back from his office. He had called me in a different antibiotic called "Avelox". 

I had not taken that one last "Levaquin". So, rather than do that, I left it in the bottle, and began the new one, the Avelox. I had not had this one before, to my knowledge. In fact I went to read up a bit on it, and seen it was in the same "family" as Levaquin. They were both fluoroquinolones types of antibiotics. 
Well, 5 more days rocked along, and in fact I had to cancel my hernia surgery, that had been scheduled for last week, on Monday 13th. I was still not well, coughing, feel lousy, my mouth broken out all in ulcers, and I knew there was NO WAY they would do surgery on me if I was still that ill. So, I called, postponed it, and then called my doctors office.

I let them know this was now the 3rd round of antibiotics, I was not much better, thus where do we go from here? So, he had me come in the next day to make sure I did not have the flu, strep, etc. In fact, I even went at his request and had a chest X-ray at the hospital. 

Anyway, he sent me home with another antibiotic, a Z-Pak. I was familiar with that one, as I had been prescribed it on occasion, especially for bronchitis or something that could turn into pneumonia. So, I came home and decided I would rest and let my husband pick up the meds later that day. Well, he comes home with this long story from the pharmacist about how these antibiotics, all in the same family of fluoroquinolones, were under a "black box warning". Now I am good about reading and watching out for medications, but never would it have occurred to me that any type of a "warning" when it came to something such as the "heart". I could see a number other issues, definitely, but not my heart at all.''

So, when Jim comes home, with this piece of paper from the pharmacist, stating the pharmacist said due to my heart problems, the heart attacks and then I have a slight "extra" beat that happens, that these particular types of antibiotics are NOT ONLY supposed to be watched for someone that has NeVER had heart issues (these meds have a very slight chance of causing heart attacks or sudden death due to a QL in the heart rhythm "(QT) arrhythmia" EVEN in those who HAD NO prior heart issues. Well, at first I was upset at the pharmacist, because here I am still ill, without an antibiotic, so my husband even goes to the pharmacy to find out exactly what the problem was. In the meantime I "googled" these antibiotics. Sure enough, there is article after article.... and in the "drug" sites, drugs.com and so on... if you look any of these up it plainly states that you should NOT take these medications BACK TO BACK, without about 48 to really more like 72 hours after the one before. So, in other words, from the 1st round of Levaquin to the 2nd antibiotic Avelox, there should have been three days between them. Then that is why when this 3rd one comes in the pharmacist is wanting to find out how long it had been between the last "Avelox" and now this new one, which is the Z-Pak? At that time, since this was like Tuesday morning, I had not taken one Sunday or Monday. I did that because I figured he would call something else in; plus if this one was NOT working, why keep taking it? So, on "Tuesday" morning technically that would have been about maybe 32 hours. I actually had taken one pill about 11:00 pm Sunday night, because I knew I could NOT take one before the surgery that morning, so I took it late in the night. So, between Sunday at midnight, until Tuesday afternoon when this got called in had been 32 hours or so. So, Jim comes home, no antibiotics yet, and then the explanation as to why I could not take then until probably Thursday, which would be about 72 hours between the last one and the new one. 

Now that I've told you in "detail" my own predicament, this is what I find out from the pharmacist "being so adamant, and not wanting to give me that prescription until he called my doctor to get an "okay" for me to have this medication so closely together after the other two. Then there is the case that my doctor prescribed not only one, but a total of 3 of these medications without telling me that I needed to "allow" at least 48-72 hours between them and why that was so important. 

At first, I was "mad" at the pharmacist. He was given a prescription for antibiotics, that the doctor prescribed. So, at first my thing was "why is he again, "interfering" in what my doctor wants me to do? Secondly, why did he not just fill it, and give me paperwork (he did give Jim a printout about the warning) & put me a note on their to either call my doctor BEFORE starting this or allow 48 to 72 hours (for me more like 72 hours since I had already been on 2 of these back to back). Thirdly, why had the pharmacist NOT already called the doctor and reminded him about the "black box" warning, and that I was a patient that had had MI, & that I also had an "extra" beat, thus then he could have asked the doctor if it was okay to fill this, give the patient the information & ask her to wait until a full 72 hours were up BEFORE me beginning the "Azithromycin"?

On the other side of the "tracks" so to speak... WHY did my doctor NOT warn me about this, and let me know I needed to wait 48 to 72 hours BEFORE the very first antibiotic, which was the Levaquin, and then the 2nd medication, the Avelox, (moxifloxican)? In fact the doctor had me come in and see him, between the 2nd and 3rd antibiotics. Since I was still ill, and seemed to have an infection that was not wanting to go away, I have to wonder again why he did not get "red flags" all over my "electronic chart" about the black box warnings and taking this group of medications too closely together, without any waiting time in between? Plus and I am still researching this one, usually "Avelox" is given AFTER every other antibiotic has NOT worked. From what I read in one place, it is the strongest before having to go into the hospital for IV antibiotics.

So, here we have TWO situations. One, my pharmacist is doing his job basically, and erring on the side of caution. Even though it means more or less going over the doctors head, he was very concerned about all of this for two reasons. First of all, these medications, fluoroquinolones, carry this warning for EVERYONE. Whether you have had a heart attack, or heart problems in the past, OR even if you have NEVER had any type of heart problems, allowing no "rest" time between them can cause heart problems anyway. Now it is a minute chance, but it is a fact that is concerning enough to have a warning on it. So, doctors should have caught that right away. Then he could have informed me of the issues, I could have just picked up the script, waited until Thursday and began the medication. Also, it should have been NOTED with a "FLAG", in my chart, that if I have to have any of these back to back, to make sure I am told to leave 48-72 hours between them. No harm, "no foul"... as far as I would have been concerned. 
That would have stopped the "buck" right there. Then if the pharmacist questioned it, I would have been able to tell him I do know about the warnings, and I not going to take these as instructed by my physician as far as the waiting period.

So, WHY did my DOCTOR, who has been seeing me since about the first day he opened his practice here NOT catch this warning? Why was it NOT flagged in my chart? I realize it was probably the first time it took 3 rounds of antibiotics to get over the chest infection, sinus whatever, but if that "warning" had been in place, even I could have asked him about "waiting" the time between them. 

Now, WHY did the pharmacist NOT JUST CALL my DOCTOR"S office and inquire about this? If he was "flagged" at the very first of trying to fill it, why go any further without calling my doctor? 

That also would have caused a great deal less "stress" on all parties involved. Especially myself, the patient. Even AFTER we asked the pharmacist to call the doctor, and he did call him; BUT after telling my doctor about the issue, my doctors tells him to "keep me on" the Avelox! Well, that was fine and dandy, BUT I only had ONE PILL LEFT! I was prescribed 7 days worth and had taken 6. I was told NOT to take the last pill by my doctor, and start the new one instead. So, now the doctor NOR the pharmacist take into consideration there is no "refill" on this, and basically i am OUT of them. I call to find out what was happening (now Jim had spoken with the pharmacist very EARLY that Morning and he promised he was getting on it right away)... so when I call that AFTERNOON fairly late at that to the pharmacy; for one I thought no one would ever answer, and 2 after I FINALLY talked with one of the assistants in the pharmacy, come to find out the pharmacist had NOT EVEN CALLED the doctor YET!!!! Here I am ON HOLD for at least 15 MINUTES while the pharmacist is then calling the doctor!!!!!

Of course, finding out that NOTHING, absolutely NOTHING had been done to resolve this was just fuel on the fire! I'm now stuck, still ill, and still needing antibiotics, BUT the very people that could resolve this did nothing. Finally, my husband gets on the phone with the pharmacist. He asks him about the prescription for the "Z-Pak" or Azithromycin, if it can be filled? Well of course it can be filled. It was send to BE FILLED! So, I told him to ask the pharmacist to fill it, we would not pick it up until the following day (which was Wednesday) & I would NOT take any of it until Thursday. Problem Solved! I do not take these too close together, I still get the antibiotics. So, that is exactly what happens. The scripts are all picked up Wednesday afternoon. Thursday morning arrives, I take my medications, the antibiotic, and all is safe on the home front.

Now WHY did ALL of that DRAMA have to play out over a PRESCRIPTION? Everywhere "other than Jim and I" there was a communication breakdown. It was apparent that the pharmacist never "thought" to call the doctor until we suggested it. Then it was more apparent that neither of them gave thought to the fact I only had ONE pill left of the middle one, the AVELOX. Moreover, WHY did my doctor NOT KNOW or do anything if there was THAT TYPE OF WARNING?!! ON these medications? 

I was already curious to know why an "antibiotic" would have these types of "side effects"? It just did not seem "logical".  I guess my thought to antibiotics is that either you have an "allergic reaction" to them, or they just rip your stomach up and make you nauseated, and then they need to be used cautiously due to these viral bugs out there now that can "go around" the antibiotics and truly cause you to build up a "resistance", thus they need to be used wisely and cautiously.

So, I go in and do a "google" search first for the "Avelox" in itself. Well, the VERY first page I pick, the URL here:

and starts out like this..."PRECAUTIONS: Before taking moxifloxacin, tell your doctor or pharmacist if you are allergic to it; or to other quinolone antibiotics (e.g., ciprofloxacin,levofloxacin); or if you have any other allergies. This product may contain inactive ingredients, which can cause allergic reactions or other problems. Talk to your pharmacist for more details.Before using this medication, tell your doctor or pharmacist your medical history, especially of: diabetes, heart problems (e.g., recent heart attack), joint/tendon problems (e.g., tendonitis,bursitis), liver disease, myasthenia gravis, nervous system disorder (e.g.,peripheral neuropathy), seizure disorder, conditions that increase your risk of seizures (e.g., brain/head injury, brain tumors, cerebral atherosclerosis).Moxifloxacin may cause a condition that affects the heart rhythm (QT prolongation)" (this excerpt above from medicine.net)....continued from the link below:

http://www.medicinenet.com/moxifloxacin-oral/page3.htm#Precautions



Then I go do another search on Azithromycin...

 ([Posted 03/12/2013] ISSUE: FDA is warning the public that azithromycin (Zithromax or Zmax) can cause abnormal changes in the electrical activity of the heart that may lead to a potentially fatal irregular heart rhythm. Patients at particular risk for developing this condition include those with known risk factors such as existing QT interval prolongation, low blood levels of potassium or magnesium, a slower than normal heart rate, or use of certain drugs used to treat abnormal heart rhythms, or arrhythmias. FDA has issued a Drug Safety Communication today as a result of our review of a study by medical researchers as well as another study by a manufacturer of the drug that assessed the potential for azithromycin to cause abnormal changes in the electrical activity of the heart. (excerpt from Medlineplus.gov)..  the rest cont. on the link below...

This is what I find http://www.nlm.nih.gov/medlineplus/druginfo/meds/a697037.html

Of course then I do a search for Levaquin (by the way which I have been prescribed several times over the years due to infections...

(You should not use Levaquin if you are allergic to levofloxacin or other fluoroquinolones (ciprofloxacin, gemifloxacin, moxifloxacin, ofloxacin, norfloxacin, and others).You may not be able to use Levaquin if you have a muscle disorder. Tell your doctor if you have a history of myasthenia gravis.To make sure Levaquin is safe for you, tell your doctor if you have:a heart rhythm disorder, especially if you take medication to treat it;a personal or family history of Long QT syndrome;tendon problems, arthritis or other joint problems (especially in children);) (excerpt from drugs.com)...and you can continue reading from the link below....

http://www.drugs.com/levaquin.html


Now I DIDI KNOW about the potential for the "achilles" tear or rupture, I had read that. Plus of course some of the other side effects from most any type of antibiotic... stomach upset, and of course any type of allergic reaction.

BUT, this "black box warning" is fairly new on fluoroquinolones. Here is a bit about these types of antibiotics. I knew they were considered in a different "class" of antibiotics, but this is something any of us, whether "autoimmune" compromised or not:

This is a link from the FDA about these medications. I found several others, but rather than tell in detail about these "very new" types of antibiotics to come out, you find MORE on the "tendon ruptures" than you do about the heart issues... so here is the link:

http://www.fda.gov/drugs/drugsafety/postmarketdrugsafetyinformationforpatientsandproviders/ucm126085.htm



Now that your head is spinning and you feel overwhelmed with information, I just wanted all of you to know this. I realize MANY of us, especially with Autoimmune Arthritic and/or other Autoimmune Illnesses are "prone" to having infections. Doctors usually treat us with more aggressive treatments due to the fact as my doctor told me last week, we can go from up and having a bit a lung infection, throat etc... to ICU and extremely ill within hours due to our immune system! So doctors are caught in a quandary, as to what to do.

I don't blame them, as far as being in this place of do you "err" on the side of giving the antibiotics, especially with a patient, that is "immune compromised", possibly like myself, they cannot take "penicillin" based medications because in one way or the other we are allergic to them. Yet, when you have someone who has already gone through one round of medication, and they are not much better, if at all, you have to move onto something else, stronger, different and so forth. Well, now the problems lie. If you have a "healthy"(I mean as in heart healthy) patient, with no prior MI's, arrhythmia's, & knowing there is a definite "warning" that these types of  fluoroquinolone antibiotics in studies have shown to have a very, very minute chance of causing issues, then as most doctors probably would, they prefer to give the antibiotic for the 7 days, because the other might mean a patient in ICU, much more ill, due to not getting the meds immediately. Then of course, and I knew about the "tendon" tears. I had read that several years back I believe about Levaquin. I had been given Levaquin due to all of my knee replacements and surgeries where there is a higher risk of infection. Thus it was one that was used on me; it needed to be, so I was "informed", and took the antibiotics, without giving it much thought from there. At that time this "other" warning about the heart problems has not come to light as far as a "black box warning".

As I was "re-reading" over parts of these sites this morning, making sure I gave links where the information was, and to make sure you, the patients that may come in contact with these types of antibiotics have what you need in order to either research more, and/or ask your doctor if you are put on any of these types of medications. Whether "heart issues" or not, you may feel you want the entire picture before jumping into the lake, in other words.

I am not sure WHY I tend to RUN INTO the strangest issues medically!? It seems if something odd, unusual, rare, and whatever else you want to call it, you can bet I've either been through it, or have a good grasp upon what is happening when someone mentions certain events they come in contact with.

Okay, long enough... and of course I want to write about other things, so I end this with....

WITH ANY medication, ESPECIALLY something NEW to YOU..

DO YOUR HOMEWORK!

Don't RELY on the Doctor, Pharmacist, or health professional to give you "accurate" information.

IF you SEE something that is ODD, or something you "feel" could be harmful to you whether the meds itself, or maybe it might not "mix well" with some other medication you take, then question iT!

Yes, they are all "professionals", BUT they are HUMAN, and with our FAST moving technology in fields such as MEDICINE changes almost DAILY!!!! So, it could be your doctor has not be informed, yet you see it. Copy it, print it and take it in with you, if you are concerned.....

My hope is this helps others to be able to deal with these issues, if they come up, and have their own "ducks" all in a row.

Go Red For Women!!! Don't take "chest pain" lightly.....

                      Go Red For Women!!!

Go Red For Women

Please support this critically important disease. As a woman "survivor" of not just one heart attack at 40 years old, but a 2ns one at 50 years old, I have first hand knowledge about just how differently MI's and their symptoms maybe for women. 

 I had NO crushing chest pain, or pain running down my left arm. I was actually a healthy eater, an avid exerciser, walked daily 5 miles plus, did not consume much alcohol, and I was at a "normal" almost a bit too underweight at the time.

My symptoms were very little. My ankles and feet began to start swelling on me, especially if I sat down at my computer for a bit. I thought not much about it, but I did notice that they continued to do that throughout the weeks before. Other than that, I had been having some "chest discomfort" for about 3 days off and on. I mean something like well, indigestion, and not really even that bad. Yet, no jaw pain, no arms pain, no other "real" symptoms that would have clued me in for what would happen on January 8th, 2001.

As I said, I had been having this "pain" off and on, and thought maybe I had a case of bronchitis. So, I rang my physician to tell him a bit, including the strange thing about swollen ankles and so forth. I had been on the phone with his receptionist explaining what had been happening, and she had me hold just a moment. I thought oh boy, they want me to come in. Nevertheless, she came back quickly, and said your doctor wants to you to get to the nearest ER now, and if you are having breathing issues, etc. call 911! Lord, I still thought this sure is a lot of trouble for a bit of pain in my chest. In fact I had almost decided NOT TO GO at ALL! If it were not for a dear friend of mine who lives in Malta.... "screaming" at me online telling me IF I did NOT go, she was going to find an ambulance to pick me up.

So, I agree. I throw some clothes on. I was totally alone (another story for another time)... and no one to drive me 20 PLUS miles to the nearest hospital. And I was out in the country enough, by the time someone came to get me, I could just drive myself. So, I grabbed my purse, keys, and cell phone, got in the car, & started to the ER, which was about 20 miles away. At one time I thought to myself "MMM.. maybe I should turn on the flashers" on. Needless to say, I began to be a bit frightened when the thought crossed my mind "What if I pass out?" Just when you need one, not one police officer in sight! So, I went through the "back way" of the town the hospital was in, and missed red lights and traffic as best I could.

I pulled up, parked, got and out and walked myself in, and calmly told the receptionist my doctor asked me to come straight to the ER, he thought I might be having a heart attack. Well, all heck broke loose! I guess my doctor may have called ahead, because they were escorting me back very quickly, right to a room, and right with IV's, EKG, Oxygen and the entire ordeal before I was even able to say much of anything. I realized when one of the doctors that I happened to know (I was a Patient REP at that hospital before this happened), when he came in after about 10 minutes or so to speak with me, he basically told me that if I had NOT gotten up, and drove myself there, the situation would not be nearly as great (even though it was not great at that moment) if I had waited even another 45 minutes. I was having a "massive" MI, from what all of the labs were telling them. There was already "clot busting" meds going into the IV, they actually even gave me an aspirin, and all kinds of things were beeping and going on around me. He told me that when I was "stable" enough, hopefully the next day, they would move me from the ICU unit their to Dallas at Baylor. Well, of course I was totally terrified!!! At the time I had NO ONE there!

My parents lived in the next town up towards Dallas, but by the time someone called them,  and they drove about 25 - 30 miles there, it took a bit. They gave me meds, pain meds, and IV's , etc... all night long, with the telemetry on watching me. So, the next morning, I took that HORRIBLE ambulance ride to Dallas! NEVER if you can AVOID it HAVE TO RIDE in an AMBULANCE!

From there I spent about 7 days, lots of labs, cardiac tests, they did an angiogram, and the old fateful "treadmill" test... of course they could not put me on the walker, and just gave me medication to up my heart rate instead.

I was totally fortunate through out it all. When ALL of the tests, work ups, labs, plus the other 100 things they did were finished, it was then known the YES the heart attack was SEVeR, BUT due to ME getting at the ER when I did, the clot busting meds, STOPPED most of the damage to the heart muscle. :):):) I did not have to have a stent at the time, had some issues with the artery above my heart going into spasms, gave me meds, sent me home, and told me to walk, eat right and call the doctor if anything else came up. :):) Talk about a miracle! This is THE time, I honestly DID see myself.... as I was laying in the ER on the gurney, when my first doctor came in, I was "watching" myself from above...  It was the oddest, surreal, but most amazing feeling I ever had.

IT maybe not that was for some, and some say they see the white lights and so forth... I just knew either my own mind kind of "detached" for a few moments, and then I could kind of look down objectively upon the situation.

So, I could go on BUT I stop there... (by the way my 2nd MI took place in 2010, only about a week or two from the date of the 1st first, just 10 years later. I had already been extremely ill, and in the 2 hospitals, and I was so totally weak, I think my heart, was so almost "broken" I feared going home. I still even after 6 weeks, was terrified of leaving the hospital. Thus the day before they were thinking of sending me home, I truly was so totally out of it, the terrible fear and stress I was in, they feel caused the 2nd one!!!



So, "Go For Red" It Could Just Save Your Life!!!