http://health-tools.health.msn.com/lupus-health-center/how-lupus-affects-your-body/?did=t2_mod2
The link above takes you to a great article that explains how Lupus effects the body in so many ways. It is very plain spoken and easy to understand. For those of you just starting out with Lupus, or one of the other thousands of Autoimmune Illnesses, and you maybe trying to have family and friends understand also, this may prove to have some very useful information in it.
http://www.webmd.com/rheumatoid-arthritis/features/rheumatoid-arthritis-8-top-myths?page=3
This one kind of helps to rid us of some of the various "wives tales" and rumor we hear a great deal about when it comes to RA...
http://www.facebook.com/l.php?u=http%3A%2F%2Fhealthyliving.msn.com%2Fdiseases%2Fibd-and-crohns%2Fdrug-shows-promise-for-people-with-colitis-crohns-disease%23scpshrjwfbs&h=fAQGopu5h&s=1
Crohn's Disease and Colitis also hit those with other Autoimmune related illnesses and/or can be a huge issue for many as "free standing" illnesses. I found this article interesting on some new medication showing promise for these two...
\http://www.facebook.com/l.php?u=http%3A%2F%2Fhealthyliving.msn.com%2Fdiseases%2Fcold-and-flu%2Fcould-flu-shots-help-prevent-heart-attacks%23scpshrjwfbs&h=WAQHWDfNx&s=1
I think most of us know taking an annual flu vaccine is just a smart thing to do. Whether you are dealing with a chronic illness or not, at the rate our flu bugs tend to change and alter themselves, staying on top with the latest vaccination is just smart. Although when you are dealing with either chronic illnesses, or something like have had a prior heart attack, things such as these types of immunizations may prove to save you from another possibly. The article above talks about if getting your flu shot could possibly help to prevent a "heart attack"?
Trying to catch up a little here on my blog. I have been so completely covered up with all of our own "drama" with especially medical stuff, that I feel I have not been here to post as I usually do. So, I shall try to get much of this on here for all of you.... have a good rest of the week... I pray wherever you are reading this, you are either safe from wild fires or drought, safe from flooding and down pours, safe from sink holes, and hurricanes... severe thunderstorms, snow, sleet and all of the other crazy Mother Nature's "little games" that are not so little at all going on... Rhia
"Through my heart's work of writing, I share with you my complex journey a top the mountain, sliding down, crawling up, & living through the realms of Autoimmune Arthritic Illnesses. Taming "The Wolf" Thru each Day... One Step at a Time … Together We Are Learning to Survive. Please follow along, to New Beginnings - looking Thru the Window Pane of Pain in life where we shall find our journey leading us to - New Perspectives
Wednesday, August 28, 2013
Friday, August 23, 2013
Dealing with a Charge of $4,500.00 for a procedure you need....
Okay, hold onto your "hats" because if this one does not upset you, floor you, and make you want to run like hell away from insurance companies and medical care, then you are much stronger than I am...
I have been awaiting a call from the "infusion" clinic all week long. My Rheumatologist and I decided it was time to stop the Humira, which seems to not be working for me. He had two choices for me, both of which are infusions. One of them, I would have to have an infusion once a month, which meant a trip to Dallas every month. The other, Rituxan, that I have two infusions to begin it, two weeks apart, THEN I can go anywhere from 4 TO usually 6 MONTHS before I need another two week treatment!!! Well, you can imagine my decision! Of course going a couple of times a year versus a monthly trip to Dallas was music to my ears, and pocket book. He also agreed that the Rituxan seemed to be a better fit under the circumstances of the fast degeneration we are seeing in my joints . So last week, I believe a week ago this past Wednesday, he began the paperwork. In fact, I went for a new bone scan and blood work while I was there at the University where he practices, and by the time I finished those, the infusion department was calling to tell me they were already working on getting me approved through insurance and so forth. So, I thought WOW they are on the ball with things. So, I felt like this would be done very soon. I really never gave much thought to my part of the "co-pay". I knew it would be considered more on an "outpatient" either hospital or stand alone treatment center, so my part should not be but about $100.00, possibly $200.00 depending on how they coded the center itself. Even though we have been out a butt load of money lately, I knew we could swing that. Anyway, I did not hear anything last week, but I knew that Humana usually drags their feet on prior authorization stuff so thus I figured it would be this past Monday or Tuesday before I heard anything. Well, over the weekend on Saturday, I went to my Mom's for a short while. When I returned my husband said that a woman from "Humana" (Right Source Pharmacy is how the call came up on caller ID) called and said that I was "approved" for the Rituxan! So we were just elated! We though wow, quick, and for the insurance to call on a weekend, that was a small miracle. So, Monday I waited all day for a call, and nothing. I called the infusion center late in the afternoon on Monday, and was told that they "may" have that paperwork, but it would not have had time to be processed and my "treatment" plan worked out etc. So, I thought okay I will hear the next day. Well, Tuesday came, nothing, Wednesday came, and I even got a letter from Humana saying I was "approved" for the medication. I was starting to get antsy by then, so Thursday afternoon late, I called the infusion center again. I was then told (by someone else) that YES, my insurance approval was in, BUT they were still working on the treatment plans and I should hear shortly, Well, we were "miffed" about it, mainly because they had acted SO QUICKLY right from the beginning, calling me before I could even leave the facility the week before and now it was like, well we will get to you when we can kind of an attitude. AS all of you know, and have read, my last couple of weeks, and more like couple of months have been just about more than a human should have to ever deal with. Everything that can have happened, should not have happened, etc.. DID or DID NOT happen for me. Between dentists (several appointments including two teeth pulled), glasses for us both, the entire realm of our PCP NO LONGER wanting to have my husband as a patient, having my hips and elbows injected, and finding out I have much more degeneration than just a couple of years ago, and the list goes on...I was just impatient as heck. So, yesterday, amidst waiting on a call about one of my own medications that I will be out of over the weekend, and my doctors office has usually called it in well before now, and the infusion clinic, and some other stuff (it is even down to the fact that we ordered Mom's glasses from the same place we did ours, and when they got to final inspection something was wrong, and they had to make them over again..which we are thrilled they caught the problem, but again it delayed her getting them)... that my nerves have had about all I can take. Behind the "scenes" of doctors, being sick, the pain.... etc... I helped my Mom order a new "settee", a new glider recliner, got her on a new phone service that is WAY cheaper than AT and T is charging her for LOCAL SERVICE ONLY, and just a whole barrage of things for her, and our own daily stuff. So, my plate has been full, running over, and just needing to be all thrown out and re-ordered (LOL).. even though some of it is "good stress", it is still stress...
So, late yesterday afternoon (after the phone RINGING ALL DAY LONG FROM JIM'S CLIENT) I had just about given up on a call. I was NOT hearing from the infusion center, I was NOT hearing if my medication got mailed out, and we both were just puzzled about all of it. Okay, the phone is FINALLY from the infusion center. So, we got excited! I began with an introduction from "Lynn", and as she started off, I could tell in her voice, she was "hesitant" about discussing benefits etc.. The first part of that conversation started with well, we have spoken with your insurance company, and your part to pay is $4,500.00!!!!!!! YES!! You are not seeing things! She did day FOUR THOUSAND FIVE HUNDRED DOLLARS!! And quickly she began saying BUT we have a CHARITY PROGRAM YOU MAY QUALIFY FOR ON THE BALANCE! Well, all I heard was that astronomical figure and here I was thinking $200.00 at THE MOST!! So, I started asking questions, like YOU ARE IN NETWORK with HUMANA RIGHT???? She told me yes several times. Now by then I was in tears, and I still have some of the laryngitis, thus I told her I would let my husband finish the conversation with her. By this time I was sobbing uncontrollably with my puppies on the sofa. Here was one FINAL HOPE with MEDICATION to possibly SLOW DOWN the horrid symptoms of RA, Lupus and possibly now they feel I "may" have MS, and my insurance has totally lost their minds., and there was NO WAY, NO HOW, I could EVER AFFORD that! I am already still reeling over the cost of a damned root canal and crown! Jim was still talking with her about this charity application, and continuing to question her about my insurance. It just was NOT RIGHT! All I should owe if they are IN NETWORK was a 100. or 200. co-pay! Hell I have had inpatients stays, major surgeries, was in the hospital 6 WEEK! and none of that cost anywhere near that figure. Inc fact for the most part I paid very little with the exception of an inpatient room charge on a couple of occasions. So nothing made sense. Jim was being send via email this "charity" application, and in the process he asked her if they would PLEASE HAVE ONE OF THEIR SUPERVISORS CALL HUMANA and RE-VERIFY benefits!??? She said of course, and Jim also got on the phone and call Humana also. He is so lucky, he got through quickly and even got transferred up the "food chain" to several people that were "higher up" and had more knowledge and more "pull". In fact they even put one of their "reps" online to go over my benefits again and see what the hell was wrong. Well, I KNEW, then they were trying to put the medication under PART D DRUG PLAN, rather than as an OUTPATIENT VISIT TO THE INFUSION CENTER! I knew that had to be "co-pay" in regard to "dough nut hole" crap with my Part D, drug plan by the conversation he was having with this guy. Well, in the meantime, after a very long talk with him, and I am saying benefits were verified WRONG, they are trying to say it is like me going to the "pharmacy" and picking up some "prescription" medication that costs thousands of dollars, then of course I would owe a co-pay etc.... and so forth, meet "deductibles" and so on. The phone rings again as we are talking about all of it, and I am saying NO WAY, NO HOW, and I WILL NOT TAKE CHARITY! I will just go back on less expensive injection at home. It is Lynn, the first lady that called me. I walk outside and Jim is saying, say that again?? He said, well we can "deal with" that. And he is smiling at me... I am so totally distraught by now, I did not even care. Well, come to find out, I WAS RIGHT! HUMANA verified benefits UNDER PART D, NOT PART B and that was totally WRONG! I do and will only OWE 100.00 !!!!!! They totally did not give any information correctly to the infusion center, and I guess the infusion center (even though they said that kind of out of pocket they do not see often) never questioned why so high??? Humana was basing everything on like I said I went in and got the Medication itself from the pharmacy.... and NOT as an outpatient "treatment".... By the way, Humana got their butts reamed by the Infusion center supervisor, and I have not called them yet, but believe me they are going to get an ear full...this has happened more than once this year with myself and my Mom... SO TO MAKE A LONG STORY a little shorter. the fact is I ONLY OWE 100.00 "CO-PAY" & I am set up to have my 1st infusion TUESDAY! So, I am already deciding what to take with me, since it is about a 6 or more hour process... :):) My main question and moral to this is HOW does someone elderly without anyone to help them DEAL WITH THIS??? If no one was around to help my Mom, like I do fighting them tooth and nail all the time, she would be paying lots of money out of pocket that she does not owe. She tried to do it with the surgery center last year. They filed with a wrong code, Humana paid it wrong, and they tried to charge Mom over 600.00 that she DID NOT OWE! It took me A YEAR to get them both straightened out... with an apology finally from the head guy at the surgery center... So, this frightens me on so many levels... I feel for those who "do not know" better.. and also HOW AND THE HELL IS ANYONE SUPPOSED TO AFFORD THOSE KINDS OF ASTRONOMICAL TYPE OF CHARGES... IT IS INSANITY!!!!! It is a wonder I did not have a heart attack... I am so very, very thankful that God was walking with me through it all... That is MY STORY and I pray I do not have to EVER GO THROUGH THAT AGAIN!
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Next post to go with the one above...
I can say that I am GLAD that I DO KNOW it well enough to KNOW THEY WERE WRONG! I guess if I have any type of thing the Lord has given me, is the "sense" enough to know when someone is being ripped off, used, abused, and taken advantage of. I have helped my Mom, and several others with things that without my help, they may have paid a great deal out of pocket that they DID NOT OWE! So I am very thankful that I have been given that "talent" if you want to call it that. It burns me up to no end to watch someone take advantage of someone else. Or someone do something or not do something right just because they are lazy, inconsiderate, OR like a good for instance just today with me, someone feels the "need" to exert their "power" over another to show they can.. I have ONE medication that comes from a pharmacy in Dallas. Always has, always will. That is how that doctor wants it, and he had them ship it "priority" mail to me. But, I still have to call about 5 days early, I usually do it about 4, unless a holiday is in there, or sometimes I know he is only in the office on Friday half a day. So, that is what happened this time. I called my script in Tuesday afternoon. I am due to RUN OUT by SUNDAY. So, because he is only in the office a half day on Fridays and he also does surgeries now sometimes on Wednesdays. I wanted to make sure I did it just early enough that I would not run out and be left hanging. Well, the "usual" woman that takes care of all scripts must be out for some reason. Because she usually gets it out the same day, or always the next day, I get a call from that pharmacy, they send me the meds, which unless something happens, and it has before, I get them the next day. Well I called and just left a brief message asking the other lady if she did get my request (you have to call their refill hotline to ask for refills) and make sure that the hotline did her the message. Well, this other "hair brained" witch must be doing the scripts for some reason. Maybe the usual woman is out this week etc. So, this other "butt" calls me back yesterday about noon and says "yes, I am calling it in today.. you were a day or two early... well no I was not, it has to be mailed... but I kept my mouth shut... well I know how she is... she loves to "play" MS. Authority... she WAITED (and I knew she would, I just felt it in my bones ) until LATE LAST EVENING. to call it in. so the pharmacy did NOT get it in time to MAIL IT YESTERDAY. SO, NOW, I call them and they are "getting it ready" and it will go out today!!!! Well that is cutting it TOO CLOSE!!! SHE should have DONE HER JOB CORRECTLY and called that script in early yesterday. She had it for two days, and could have already done it. It was only about 4 or 5 days before it was to run out... but she is that kind of person, if she thinks she can MAKE HERSELF LOOK LIKE SHE IS SOME KIND OF AUTHORITY, then she does it and guess who suffers??? The Patients!! There was NO reason to HOLD it up, other than being a jack ass. The normal woman would have called it in on Wednesday, I would have them no later than today... no harm, no foul... now if something happens, I may not have it tomorrow... hopefully the mail will go as it should and I will receive the package tomorrow... but SHE wanted to make herself LOOK like she was IN CHARGE!!! Those are the kinds of people that just burn me up!!! They DO NOT give a damned about anyone but themselves. She could care less if she harms or hurts someone else as long as she "got" her way... and that was just to be ridiculous!!! I see it time after time... and not just myself... I watch people bless their hearts get run over like a tractor trailer by garbage like that... and they just "take it" because they do not know NOT TO! People do that with their doctors. We were "taught" that doctors are "Gods" ..What they said was the BIble and we MUST abide by it... BULL, if you go to a doctor and you are not satisfied with their practices, or you feel like they are not taking care of you as they should, then GET ANOTHER ONE!!! Do NOT think they are PERFECT! We now tend to know better, but many people still and my Mom is one of them, think what that doctor says is gospel,., it happened with her heart... the "1st" test they ran on her heart back in January showed "extreme mitral prolapse" BUT MOM was NOT having the SYMPTOMS that really showed it being to the point of being SERIOUS! The doctor was already talking about taking her to Dallas, doing a procedure, then doing open heart surgery etc... and it MAY COME TO THAT LATER BUT... I sat down and said, can we not do something else first, before we jump off into major heart surgery??? So, due to her NOT taking her meds that morning of the first test, and having a great deal more fluid on her than usual, the doctor thought that could be contributing to it "appearing" worse than it was. Well, the doctor put her on a larger diuretic pill, and asked her to drink some "less" fluids, especially the 3 days before the next test... and when they did another test... it was NOT severe, and in fact it was not even bad enough to go for another special test in Dallas! So, there are times if you do not say something, or someone does not say or do something, you may go through something totally not necessary.... and I guess somewhere in my "genes" is something that makes me want to "protect" those that are taken advantage of, in any way, abuse, of any kind... and of those out there that are like a pack of wolves, just waiting for some poor soul to come along they can "pounce" on..
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Third to go with 1st two....
The "benefits" and entitlements we "should" get that honestly, we the people paid in for all the years we worked seem to have gone for everything but OUR entitlements! That "robbing" Peter to pay "Paul" ... thus now when we are having people work many more years, and then retire at later times, they also collect more of their entitlements like Medicare and Social Security for more years. I guess no one thought about that when people lived to be only in their 60's or so. Now we have MANY elderly that are still driving their cars and taking care of themselves into their 80's plus! Thus we are going to need more money to pay our their benefits, and then we have children that soon will be in the work force headed for either "put your own money aside for retirement" or get older and have nothing. It has not been that long ago, that my Dad retired. After 45 years at the same place, he got a retirement and between that and his Social Security, they did okay. But, that was also when interest rates were high and they made a good deal of money on investments. Now that same money is making NOTHING! I see what tiny amounts Mom's little bit of nest egg makes and there no way one she could "live off what little interest" that money makes now. IT is insanity. It seems I use that word a lot lately... but it is this entire nation, our entire world has just dropped down to dog eat dog, and GREED is the name of the game. I am truly "ashamed" of humans and some of the horrible stunts they pull. So, I get the entire thing about trying to get "benefits" you are due to even work for you. And now I read that our UPS corporation is cutting their employees families completely out of the health insurance! I don't even think they are going to "offer" the benefits if you pay out of pocket for them! And UPS is NO SMALL corporation! I also cannot fathom that "cities", huge cities in the US can go "bankrupt"???? How does a city spend so much money when taxes are paid by citizens and all kinds of "revenue" is made, go "belly up?" What does that tell us about our nation? heck our World? WE have "nations" in the same shape! Their "money" is not worth the paper it is written on... same way with homes here. How can you take a home that was just valued at 300,000. a couple of years ago, and it only be worth 100,000.00 today!???? Where the hell did all of that come from??? Property "used" to be the "best" investment you could make. We were told it "always holds its value"... well I am here to tell you NOT ANYMORE! I don't think there is one item in this world that truly will hold its "value"... everything is volatile... nothing is "steady"... we live in a world much like a volcano... we never know when it will explode or worse implode all around itself...
Ah, and I am quite sure... and am NOT quite... through....
I have been awaiting a call from the "infusion" clinic all week long. My Rheumatologist and I decided it was time to stop the Humira, which seems to not be working for me. He had two choices for me, both of which are infusions. One of them, I would have to have an infusion once a month, which meant a trip to Dallas every month. The other, Rituxan, that I have two infusions to begin it, two weeks apart, THEN I can go anywhere from 4 TO usually 6 MONTHS before I need another two week treatment!!! Well, you can imagine my decision! Of course going a couple of times a year versus a monthly trip to Dallas was music to my ears, and pocket book. He also agreed that the Rituxan seemed to be a better fit under the circumstances of the fast degeneration we are seeing in my joints . So last week, I believe a week ago this past Wednesday, he began the paperwork. In fact, I went for a new bone scan and blood work while I was there at the University where he practices, and by the time I finished those, the infusion department was calling to tell me they were already working on getting me approved through insurance and so forth. So, I thought WOW they are on the ball with things. So, I felt like this would be done very soon. I really never gave much thought to my part of the "co-pay". I knew it would be considered more on an "outpatient" either hospital or stand alone treatment center, so my part should not be but about $100.00, possibly $200.00 depending on how they coded the center itself. Even though we have been out a butt load of money lately, I knew we could swing that. Anyway, I did not hear anything last week, but I knew that Humana usually drags their feet on prior authorization stuff so thus I figured it would be this past Monday or Tuesday before I heard anything. Well, over the weekend on Saturday, I went to my Mom's for a short while. When I returned my husband said that a woman from "Humana" (Right Source Pharmacy is how the call came up on caller ID) called and said that I was "approved" for the Rituxan! So we were just elated! We though wow, quick, and for the insurance to call on a weekend, that was a small miracle. So, Monday I waited all day for a call, and nothing. I called the infusion center late in the afternoon on Monday, and was told that they "may" have that paperwork, but it would not have had time to be processed and my "treatment" plan worked out etc. So, I thought okay I will hear the next day. Well, Tuesday came, nothing, Wednesday came, and I even got a letter from Humana saying I was "approved" for the medication. I was starting to get antsy by then, so Thursday afternoon late, I called the infusion center again. I was then told (by someone else) that YES, my insurance approval was in, BUT they were still working on the treatment plans and I should hear shortly, Well, we were "miffed" about it, mainly because they had acted SO QUICKLY right from the beginning, calling me before I could even leave the facility the week before and now it was like, well we will get to you when we can kind of an attitude. AS all of you know, and have read, my last couple of weeks, and more like couple of months have been just about more than a human should have to ever deal with. Everything that can have happened, should not have happened, etc.. DID or DID NOT happen for me. Between dentists (several appointments including two teeth pulled), glasses for us both, the entire realm of our PCP NO LONGER wanting to have my husband as a patient, having my hips and elbows injected, and finding out I have much more degeneration than just a couple of years ago, and the list goes on...I was just impatient as heck. So, yesterday, amidst waiting on a call about one of my own medications that I will be out of over the weekend, and my doctors office has usually called it in well before now, and the infusion clinic, and some other stuff (it is even down to the fact that we ordered Mom's glasses from the same place we did ours, and when they got to final inspection something was wrong, and they had to make them over again..which we are thrilled they caught the problem, but again it delayed her getting them)... that my nerves have had about all I can take. Behind the "scenes" of doctors, being sick, the pain.... etc... I helped my Mom order a new "settee", a new glider recliner, got her on a new phone service that is WAY cheaper than AT and T is charging her for LOCAL SERVICE ONLY, and just a whole barrage of things for her, and our own daily stuff. So, my plate has been full, running over, and just needing to be all thrown out and re-ordered (LOL).. even though some of it is "good stress", it is still stress...
So, late yesterday afternoon (after the phone RINGING ALL DAY LONG FROM JIM'S CLIENT) I had just about given up on a call. I was NOT hearing from the infusion center, I was NOT hearing if my medication got mailed out, and we both were just puzzled about all of it. Okay, the phone is FINALLY from the infusion center. So, we got excited! I began with an introduction from "Lynn", and as she started off, I could tell in her voice, she was "hesitant" about discussing benefits etc.. The first part of that conversation started with well, we have spoken with your insurance company, and your part to pay is $4,500.00!!!!!!! YES!! You are not seeing things! She did day FOUR THOUSAND FIVE HUNDRED DOLLARS!! And quickly she began saying BUT we have a CHARITY PROGRAM YOU MAY QUALIFY FOR ON THE BALANCE! Well, all I heard was that astronomical figure and here I was thinking $200.00 at THE MOST!! So, I started asking questions, like YOU ARE IN NETWORK with HUMANA RIGHT???? She told me yes several times. Now by then I was in tears, and I still have some of the laryngitis, thus I told her I would let my husband finish the conversation with her. By this time I was sobbing uncontrollably with my puppies on the sofa. Here was one FINAL HOPE with MEDICATION to possibly SLOW DOWN the horrid symptoms of RA, Lupus and possibly now they feel I "may" have MS, and my insurance has totally lost their minds., and there was NO WAY, NO HOW, I could EVER AFFORD that! I am already still reeling over the cost of a damned root canal and crown! Jim was still talking with her about this charity application, and continuing to question her about my insurance. It just was NOT RIGHT! All I should owe if they are IN NETWORK was a 100. or 200. co-pay! Hell I have had inpatients stays, major surgeries, was in the hospital 6 WEEK! and none of that cost anywhere near that figure. Inc fact for the most part I paid very little with the exception of an inpatient room charge on a couple of occasions. So nothing made sense. Jim was being send via email this "charity" application, and in the process he asked her if they would PLEASE HAVE ONE OF THEIR SUPERVISORS CALL HUMANA and RE-VERIFY benefits!??? She said of course, and Jim also got on the phone and call Humana also. He is so lucky, he got through quickly and even got transferred up the "food chain" to several people that were "higher up" and had more knowledge and more "pull". In fact they even put one of their "reps" online to go over my benefits again and see what the hell was wrong. Well, I KNEW, then they were trying to put the medication under PART D DRUG PLAN, rather than as an OUTPATIENT VISIT TO THE INFUSION CENTER! I knew that had to be "co-pay" in regard to "dough nut hole" crap with my Part D, drug plan by the conversation he was having with this guy. Well, in the meantime, after a very long talk with him, and I am saying benefits were verified WRONG, they are trying to say it is like me going to the "pharmacy" and picking up some "prescription" medication that costs thousands of dollars, then of course I would owe a co-pay etc.... and so forth, meet "deductibles" and so on. The phone rings again as we are talking about all of it, and I am saying NO WAY, NO HOW, and I WILL NOT TAKE CHARITY! I will just go back on less expensive injection at home. It is Lynn, the first lady that called me. I walk outside and Jim is saying, say that again?? He said, well we can "deal with" that. And he is smiling at me... I am so totally distraught by now, I did not even care. Well, come to find out, I WAS RIGHT! HUMANA verified benefits UNDER PART D, NOT PART B and that was totally WRONG! I do and will only OWE 100.00 !!!!!! They totally did not give any information correctly to the infusion center, and I guess the infusion center (even though they said that kind of out of pocket they do not see often) never questioned why so high??? Humana was basing everything on like I said I went in and got the Medication itself from the pharmacy.... and NOT as an outpatient "treatment".... By the way, Humana got their butts reamed by the Infusion center supervisor, and I have not called them yet, but believe me they are going to get an ear full...this has happened more than once this year with myself and my Mom... SO TO MAKE A LONG STORY a little shorter. the fact is I ONLY OWE 100.00 "CO-PAY" & I am set up to have my 1st infusion TUESDAY! So, I am already deciding what to take with me, since it is about a 6 or more hour process... :):) My main question and moral to this is HOW does someone elderly without anyone to help them DEAL WITH THIS??? If no one was around to help my Mom, like I do fighting them tooth and nail all the time, she would be paying lots of money out of pocket that she does not owe. She tried to do it with the surgery center last year. They filed with a wrong code, Humana paid it wrong, and they tried to charge Mom over 600.00 that she DID NOT OWE! It took me A YEAR to get them both straightened out... with an apology finally from the head guy at the surgery center... So, this frightens me on so many levels... I feel for those who "do not know" better.. and also HOW AND THE HELL IS ANYONE SUPPOSED TO AFFORD THOSE KINDS OF ASTRONOMICAL TYPE OF CHARGES... IT IS INSANITY!!!!! It is a wonder I did not have a heart attack... I am so very, very thankful that God was walking with me through it all... That is MY STORY and I pray I do not have to EVER GO THROUGH THAT AGAIN!
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Next post to go with the one above...
I can say that I am GLAD that I DO KNOW it well enough to KNOW THEY WERE WRONG! I guess if I have any type of thing the Lord has given me, is the "sense" enough to know when someone is being ripped off, used, abused, and taken advantage of. I have helped my Mom, and several others with things that without my help, they may have paid a great deal out of pocket that they DID NOT OWE! So I am very thankful that I have been given that "talent" if you want to call it that. It burns me up to no end to watch someone take advantage of someone else. Or someone do something or not do something right just because they are lazy, inconsiderate, OR like a good for instance just today with me, someone feels the "need" to exert their "power" over another to show they can.. I have ONE medication that comes from a pharmacy in Dallas. Always has, always will. That is how that doctor wants it, and he had them ship it "priority" mail to me. But, I still have to call about 5 days early, I usually do it about 4, unless a holiday is in there, or sometimes I know he is only in the office on Friday half a day. So, that is what happened this time. I called my script in Tuesday afternoon. I am due to RUN OUT by SUNDAY. So, because he is only in the office a half day on Fridays and he also does surgeries now sometimes on Wednesdays. I wanted to make sure I did it just early enough that I would not run out and be left hanging. Well, the "usual" woman that takes care of all scripts must be out for some reason. Because she usually gets it out the same day, or always the next day, I get a call from that pharmacy, they send me the meds, which unless something happens, and it has before, I get them the next day. Well I called and just left a brief message asking the other lady if she did get my request (you have to call their refill hotline to ask for refills) and make sure that the hotline did her the message. Well, this other "hair brained" witch must be doing the scripts for some reason. Maybe the usual woman is out this week etc. So, this other "butt" calls me back yesterday about noon and says "yes, I am calling it in today.. you were a day or two early... well no I was not, it has to be mailed... but I kept my mouth shut... well I know how she is... she loves to "play" MS. Authority... she WAITED (and I knew she would, I just felt it in my bones ) until LATE LAST EVENING. to call it in. so the pharmacy did NOT get it in time to MAIL IT YESTERDAY. SO, NOW, I call them and they are "getting it ready" and it will go out today!!!! Well that is cutting it TOO CLOSE!!! SHE should have DONE HER JOB CORRECTLY and called that script in early yesterday. She had it for two days, and could have already done it. It was only about 4 or 5 days before it was to run out... but she is that kind of person, if she thinks she can MAKE HERSELF LOOK LIKE SHE IS SOME KIND OF AUTHORITY, then she does it and guess who suffers??? The Patients!! There was NO reason to HOLD it up, other than being a jack ass. The normal woman would have called it in on Wednesday, I would have them no later than today... no harm, no foul... now if something happens, I may not have it tomorrow... hopefully the mail will go as it should and I will receive the package tomorrow... but SHE wanted to make herself LOOK like she was IN CHARGE!!! Those are the kinds of people that just burn me up!!! They DO NOT give a damned about anyone but themselves. She could care less if she harms or hurts someone else as long as she "got" her way... and that was just to be ridiculous!!! I see it time after time... and not just myself... I watch people bless their hearts get run over like a tractor trailer by garbage like that... and they just "take it" because they do not know NOT TO! People do that with their doctors. We were "taught" that doctors are "Gods" ..What they said was the BIble and we MUST abide by it... BULL, if you go to a doctor and you are not satisfied with their practices, or you feel like they are not taking care of you as they should, then GET ANOTHER ONE!!! Do NOT think they are PERFECT! We now tend to know better, but many people still and my Mom is one of them, think what that doctor says is gospel,., it happened with her heart... the "1st" test they ran on her heart back in January showed "extreme mitral prolapse" BUT MOM was NOT having the SYMPTOMS that really showed it being to the point of being SERIOUS! The doctor was already talking about taking her to Dallas, doing a procedure, then doing open heart surgery etc... and it MAY COME TO THAT LATER BUT... I sat down and said, can we not do something else first, before we jump off into major heart surgery??? So, due to her NOT taking her meds that morning of the first test, and having a great deal more fluid on her than usual, the doctor thought that could be contributing to it "appearing" worse than it was. Well, the doctor put her on a larger diuretic pill, and asked her to drink some "less" fluids, especially the 3 days before the next test... and when they did another test... it was NOT severe, and in fact it was not even bad enough to go for another special test in Dallas! So, there are times if you do not say something, or someone does not say or do something, you may go through something totally not necessary.... and I guess somewhere in my "genes" is something that makes me want to "protect" those that are taken advantage of, in any way, abuse, of any kind... and of those out there that are like a pack of wolves, just waiting for some poor soul to come along they can "pounce" on..
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Third to go with 1st two....
The "benefits" and entitlements we "should" get that honestly, we the people paid in for all the years we worked seem to have gone for everything but OUR entitlements! That "robbing" Peter to pay "Paul" ... thus now when we are having people work many more years, and then retire at later times, they also collect more of their entitlements like Medicare and Social Security for more years. I guess no one thought about that when people lived to be only in their 60's or so. Now we have MANY elderly that are still driving their cars and taking care of themselves into their 80's plus! Thus we are going to need more money to pay our their benefits, and then we have children that soon will be in the work force headed for either "put your own money aside for retirement" or get older and have nothing. It has not been that long ago, that my Dad retired. After 45 years at the same place, he got a retirement and between that and his Social Security, they did okay. But, that was also when interest rates were high and they made a good deal of money on investments. Now that same money is making NOTHING! I see what tiny amounts Mom's little bit of nest egg makes and there no way one she could "live off what little interest" that money makes now. IT is insanity. It seems I use that word a lot lately... but it is this entire nation, our entire world has just dropped down to dog eat dog, and GREED is the name of the game. I am truly "ashamed" of humans and some of the horrible stunts they pull. So, I get the entire thing about trying to get "benefits" you are due to even work for you. And now I read that our UPS corporation is cutting their employees families completely out of the health insurance! I don't even think they are going to "offer" the benefits if you pay out of pocket for them! And UPS is NO SMALL corporation! I also cannot fathom that "cities", huge cities in the US can go "bankrupt"???? How does a city spend so much money when taxes are paid by citizens and all kinds of "revenue" is made, go "belly up?" What does that tell us about our nation? heck our World? WE have "nations" in the same shape! Their "money" is not worth the paper it is written on... same way with homes here. How can you take a home that was just valued at 300,000. a couple of years ago, and it only be worth 100,000.00 today!???? Where the hell did all of that come from??? Property "used" to be the "best" investment you could make. We were told it "always holds its value"... well I am here to tell you NOT ANYMORE! I don't think there is one item in this world that truly will hold its "value"... everything is volatile... nothing is "steady"... we live in a world much like a volcano... we never know when it will explode or worse implode all around itself...
Ah, and I am quite sure... and am NOT quite... through....
Thursday, August 22, 2013
Giving a "Voice" to All of the Frustration of Being Chronically Ill Human Being...
I believe the very first thing I want to point out is in the "title" of this blog post. That is the two words, "Human Being". None of us are robots, although as of late, many act like it. None of us are beyond mistakes, stresses, illness, economic woes, job losses, kid issues, family problems, and an entire gamut of "what could" and does happen to "good" people. When I say "good" people, I am speaking of us main stream normal everyday folks, that try our best to do our jobs, take care of our bills, raise a family, and be a "stand up" kind of person, who wants what is best for all. We don't begrudge others a nice life, a good vehicle, health for them and their families, and the ability have have what is considered a "quality of Life" we feel is truly worth living.
All of that sounds very simple. Life.. used to be "simple". I know what some will say to my next statement, "life seemed a great deal more simple, when we did not have but a one room school house, raised our own food and animals, got our milk directly from the source, had the "ice" man delivery the "ice" block for your ice box, had a radio NOT a TV, not the internet, not fast cars, cell phones, video games, and back when kids went outside to play. When kids played then, even in my life, I went out to "use" my imagination to occupy time. I was an only child, thus I spent Summers outside, with my dollar, my little table, making up all kinds of different things that kept me out in fresh air, active, and not sitting in front of a television for 12 or more hours a day. I can see now "hind sight being what it is...20-20" many things that are contributing factors to all of our "hardships", our downfalls, our chronic illnesses, whether emotional, mental or physical that we want to shove under the rug, run to the doctor, take a quick pill, much like running through the "drive-thru" for coffee, we are too lazy to park, get out of the car, and go into a place to get coffee anymore.. our excuse?? We are TOO busy! Well, if you are TOO busy to go inside and buy your lunch, get a donut, pick up a six pack of beer (now that you can even drive thru for freaking beer), then I say you are TOO DAMNED BUSY!
All of the above seems to not have much to do with what the title of this post is, nor does it seem any of it relevant to chronic illness and chronic pain. But, it is all relevant. Our entire lives have evolved, in good ways, I will not say that all we have accomplished is "bad". But, we have also "engineered" ourselves right out of jobs, "automated" our lives into a never stopping conveyor belt of high prices, lower quality items, food that is "tainted", medications that are "tainted", people that are not willing to get up off their butts and do their jobs. If they can't sit behind a desk and be "boss", then they think the job is "beneath" them. Boy, you cannot tell me you do not know those like that. I have met several in my life time so far, and it gets worse everyday.
We will not accept that WE HUMANS HAVE RUINED OUR WATER, AIR, AND LAND!!! WE have MELTED THE POLAR CAPS. WE have CAUSED CANCERS, HEART ATTACKS, AND STRESS THAT SEND PEOPLE RUNNING TO THE NUT HOUSE! Or "self-medicating"... how many do you know that weekly, daily use alcohol, food, TV, video games, being on line in a social media place, possibly other drugs that are not "legal", sex, shopping, spending more money than they make... and the list goes on and on... of ADDICTIONS! We totally rely on so many addictions, whether to food, spending, or alcohol to "prop" ourselves up daily so we can do it all over again in this rat race we call life.
We will bitch, moan, whine, and stomp our feet, of things we do NOT believe are RIGHT! BUT, take action?? IF you can gripe about it, then you can DO SOMETHING! Write an email, a letter, make a phone call, attend a rally... do something other than give these things "lip service". I can tell you right now WORDS with NO ACTIONS, gets you NOTHING BUT FURTHER UPSET AND STRESS! It only leads to more frustration, more depression, more attitude of giving up and throwing in the dish towel of life. So, why are we so in "fear" of voicing how we feel???
What makes us rant and rave "online", but come up to the person, or place, or thing that is upsetting you, and lips are closed, mouth shut, and a "pleasant" face put on... in other words DO NOT rock the BOAT!!! Why??? FEAR???? Have WE as a society that is supposed to be the MOST DEMOCRATIC (I get to where I despise that word... we need a "new" word for those that can give "voice" to their opinions and thoughts, without feeling like you have to "apologize" for what you have done or said. As long as you are NOT HARMING YOUR NEIGHBOR, or causing misery for someone else, you SHOULD BE ABLE TO STAND UP AND SAY HOW YOU FEEL! You should not feel as if your friends, family, doctors, other professionals, anyone is going to "stop" seeing you, not take care of you, no longer "fill" your medications... just because you may not "see" something the same way that another does. WHY are we SO ASHAMED of our own thoughts and feelings.?
We live in enough fear of terrorists, of bombs, of those that shoot people for no reason, of the insanity that happens here daily... we are fighting wild fires,, droughts, and ALL OF THE MOTHER NATURE EVENTS that if we look back in history, MAN CREATED HIS OWN DEMISE. We have ignored our Earth way too long. We have ignored polluting it, of using it up, of covering it up with concrete; then all we can do is "finger point" to who did it? ALL of us! Each and everyone of us are contributors to our own realms of waste, pollution, of the demise of the medical profession, of the demise of our own government. We can bitch all we want to, but WE PUT THEM IN OFFICE! If it is broke, FIX IT! Sometimes the well just runs dry and you have to freaking drill for a new one. And this "well" for our government is dry and getting drier daily.
Ignorance is NOT bliss! It is just plain ignorance. And "denying" all of what is happening, is just sticking your head in the sand and watching for the other shoe to drop on it.
Now onto the "REAL REASON" I am writing this morning... As you can tell, if you are following me here, or on Facebook, my life, as well as my family's life has been in a freaking turmoil now for more than weeks, let's try months. Since January of this year, thank goodness for my spouse, and my Mom, and all of those out there that are "rooting" for my side of the ball game.
I began with what seemed like the "flu". Made sense. After all it was "flu" season. Yet, each day, rather than get better, I seemed to be worse. I began to have pain, and it got worse with each passing day. I developed worse fatigue, muscle aches, deep down in the bone pain, in my legs, my feet, my ankles, hips, and lower back. I was so extremely fatigued, that for weeks, I was literally not able to even drag myself around my drive way to walk, water my flowers, hell I could not even sit at my computer. I went to my regular doctor, my pain doctor, to a neurologist, in fact 3 of them... and had every kind of blood test, EMG, NCS, CT Scans... all coming up with "something" small, that may have "contributed" to the pain, etc... nothing that should cause such massive pain, massive fatigue, and make me feel like I had been just ran over by a bus once or twice. We even questioned my pain pump and went so far as to have the medication completely removed flushed and put new medication back in.
this was already mid-February. We did not know where else to go. I had a couple of doctors that gave me a "new diagnosis". One of which was "myasthenia gravis", and they even suspected Multiple Sclerosis, of which had been suspected on several occasions. This went on until about the first of March. Then one morning, I woke up, and all of the "symptoms" seemed somewhat "better"... each day thereafter it seemed to have a bit better feeling. We never put our finger on the reason why. so in essence I think myself, mu spouse, the doctors "chalked" it up to the "Lupus" and a very bad flare... and the RA, of which the meds were not working as well as they should be... plus I probably did have the flu, and all of it caused that "perfect storm" of illness that raged through my body. What I never did really think about, is in the meantime my pain doctor had "upped" my pain medication when all of the stuff began, and he left it like that. So, possibly I was of course better, other symptoms were going away, but the "pain" could have been somewhat masked over by the increase (change) of pain medication. I got "better", yet I really never got "well". I had other health issues come up, a "myoglobin" issue, that would be a contributor to muscle pain, the RA of course, of which the Humira was definitely not working as it should have been, plus several other things like finding out I had radiculopathy issues, and my lower lumbar spine had definitely done some deterioration in midst all of. Any and all of those things could be combined with my Chronic Lupus/RA issues, to be the culprit of my ongoing new type of pain/illness issues.
Well, the boat seemed to rock a little and put me back in whatever I want to "think" is kind of "normal" for my life. Yet, that was NOT to last long. Come about Mother's Day. I recall it being close to then because I and my Mom were planning to go to the Casino to spend the night. On that Friday before I began to just feel lousy. Again fatigue set in and almost simultaneously, the pain I had so hoped would not return was back with a vengeance. I was definitely in no shape to make even a 2 hour trip to have a good time for Mother's Day, so we decided to postpone and go the following weekend. Well, by then things were already worse. Again, the severe and deep bone pain, in my hips. legs, feet ankles wrists... it was all back once more. This time I went straight to my PCP, getting prednisone injections and a 14 day step down of it, and having them do what they could to "stop" again what we thought was a very bad flare. From there I have battled everything from several of my teeth needing to be pulled all of a sudden, to several cavities, to the double vision I have been fighting for over a year (not one doctor, even the best "neuro-opthamologist") ever figured out why my vision is double., to the excruciating pain I was and this time again it required not only an increase of my oral "break through" meds, BUT an increase of the medication that is in my pain pump. I have spent week and weeks, almost crawling at times around my house, not feeling like even baking something. I have been to my orthopedic surgeon who injected both hips and both elbows that were giving me heck. He feels that my thumbs are too deteriorated to even put medication in, and my hips, and elbows also show signs of further deterioration, which could cause the pain in my legs, hips, lower back, feet and so forth. I am continuing the battle with my own health issues, then week before last I got not only just slapped in the face with, but knocked down with a "suddenly very Odd" "certified letter" from our own Primary Care Doctor. Now this man is wonderful. He diagnosed my Lupus. He had been the doctor who found much of what was going on with me and had been working to "fix" what he could, and sent me to other doctors to do other things to help me feel as well as I possibly could, under my chronic health issues.
This "letter" came while I happened to be at my Mom's and my husband got it. In fact it was for my husband. When I got home, I stepped out to speak with him on our front porch and I could tell by the look on his face, something was very wrong. I had not been gone long, so of course, I was "in a panic" wondering if something happened to one of the dogs, or he had gotten a phone call with bad news. When he began to tell me about this letter, a certified letter he received in the mail, I asked him what he had won? Then I abruptly saw and heard that this was no joke, that this was a serious situation, and after he finished, I had to read the letter and see with my own eyes what he had told me.
It was very formally addressed to him, as if a "stranger" had written it. Yet, this certainly was not a "stranger" at all. This was OUR FAMILY PHYSICIAN that had been our doctor now for at least 6 years. For me, a little longer, because I went to him first. In fact I was probably one of his first 15 patients. He had not been in practice very long at all when I felt like I had found the "perfect march" as far as a family practitioner. Not only did he have an incredible "bedside manner", he is intelligent, he was way educated much more than the usual family doctor, because he tested me and found out things about my health issues that not one doctor in 40 plus years had been able to find.
My Mom was also looking for a new PCP. Her previous one was old, and going out of business basically, so I suggested my new one to her also. She went and also was very pleased. He seemed to be right on top of the latest and greatest. At first, he did it all. There was not any of this referring you to 15 doctors. He tested, found out what was wrong, and with "your" help as an "educated" patient (another big plus in my book, he loved educated patients), he would treat you himself, if possible without sending you all over the country. Again, a small town, with very few PCP in it all the years I was here, this doctor was like an angel sent from above. Things rocked along, and my husband began having issues with his lower back. He does not have insurance. Thus he would be a "cash" pay patient for awhile, until we could afford some kind of policy. But, this new doctor seemed to be much more concerned about "patients" than money, and he charged a very nominal charge to see my husband, he also tried to keep tests, scans, and expensive things out of the picture unless absolutely necessary. So, when my husbands back began to give him more problems other than just the usual three or four times a year, this doctor did a few Xrays, determined the situation was probably something he was born with, and as the years went by, arthritis, and a narrowing of the spinal canal was putting pressure on the main nerves in the lower spine, thus causing horrid pain off and on. Again, we were very impressed. He tried several different types of medications, also treated him for blood pressure issues later, and High cholestral problems, and we were ticking right along, no problems. In fact I had highly recommended him to anyone that happens to be in need of a family doctor.
Well, there was a couple of issues that we had to deal with off and on. One, was the "office manager". He was just an ass, to put it bluntly. He always looked down his nose at everyone. He thought he knew it all, and even though he I am sure is "good" at his job... he is NOT good with people at all. I had more than once complained about his attitude and that I did NOT want to be treated as if I am pond scum. I was certainly not bad about being an overly needy patient, and I tried to refrain from asking for too many "favors". In fact, I really never asked for anything other than a few forms to be filled out in order to get my husbands medication filled for free or for much cheaper than the pharmacies.
This doctor diagnosed my Lupus and RA. He was the one that started me on medications for them, and took care of me, while I tried to find a Rheumatologist with some kind of sense for sure. To this moment, I nor Jim, nor anyone can figure out what the hell went on, and what caused this "sudden" issue, when it is plain as the nose on anyone's face that there was an Error, on the part of their office to NOT tell the Lab to DO THE BLOOD TEST A CERTAIN WAY OR, the LAB did NOT run it the way they were told. Either that, or there is SOMETHING, SOMEONE, is NOT telling me! I know what I see. I know what happens when I am around and there to witness it. But, if I am totally left in the dark about an issue, or something not right, then I cannot make an informed "reason" as to why something like this happens.
Now I do know a couple of "facts". First of all, this business about the government, the DEA, the entire realm of mess in Florida with pain clinics and seedy "quack" pain doctors etc.. has definitely put "fear" into lots of people, along with made a "Good medication" when USED CORRECTLY!, Look like a monster! But, as I said "used CORRECTLY"... IT IS LIKE anything else, if you "abuse" it, then it is Bad for you... or bad for whatever... Then you give "too much power" to some people in a place such as someone over the "legalities" of meds without any governing power over them to oversee what is done, is NOT harming some, and you get a freaked up pile of mess, that THE LEGITIMATE PATIENTS suffer needlessly from! There is NO reason, not one that any person that is truly a Chronic Pain Patient, that has NEVER abused anything, that has lived by their "pain contract", that has "passed" "tests" of whatever, all this time, or been treated like things are totally fine, only to be delivered a ridiculous letter, without any type of warning, without one sit down in front of you and explain WHY this is happening! IF anything is wrong with this, THAT POINT is what is MOST WRONG! WHY NOT have a CONVERSATION AND EXPLAIN this to a PATIENT, rather than take the "unprofessional" and just plain rude way, and not speak to them, not answer their emails, not answer a phone call, not ask them to come in and have a visit, nothing... and then you are also seeing their families??? Now how is that going to go? Like I said above, this situation puts me in such a horrid crack... I am stuck between first of all NOT KNOWING for SURE what is going on, only what I see and know... it puts me in a place of course of being upset, embarrassed, and thinking why should I see them if I could get the same treatment. Down the line a few months, and they stop refilling my medications? And I am not talking about pain medications, I am speaking of medications for my Lupus, my blood pressure, heart and so forth. If this doctor is leaving, or is "mad" at my family, or has something with us that he does not want to treat my family, then he should be professional enough, to just speak up face to face, and tell us what the hell the deal is! If I or my husband, or my Mom, have offended someone, or hell knowing this town, God only knows what kind of stupid "rumor" he has been told... because believe me this town is known for its lying, gossiping, half truths. People do NOT get the entire story, so they "make UP" what they want to... in which sometimes people's lives get frigged up due to a flat out lie being told. Before you open up your mouth when it involves anyone's "reputation" or their "good name", you had better give it deep thought, and then really understand what you could cause. If you are going to "stir up harsh feelings" or cause someone to be "smeared" and you are not sure what you are talking about, it is better to just keep your mouth shut, rather than say something you will harm someone with by being nosy. Small town are noted for that crap. One reason why I did NOT want to move back here... the small town mentality, the gossip, the "whispering" behind your back... those things I just cannot stomach. Since I have been trying now for 3 days to "finish" this and post it, I'm going to say it is "finished" enough to post & if I have further thoughts, I will just add it on and let you know there is a new "piece" under it...
All of that sounds very simple. Life.. used to be "simple". I know what some will say to my next statement, "life seemed a great deal more simple, when we did not have but a one room school house, raised our own food and animals, got our milk directly from the source, had the "ice" man delivery the "ice" block for your ice box, had a radio NOT a TV, not the internet, not fast cars, cell phones, video games, and back when kids went outside to play. When kids played then, even in my life, I went out to "use" my imagination to occupy time. I was an only child, thus I spent Summers outside, with my dollar, my little table, making up all kinds of different things that kept me out in fresh air, active, and not sitting in front of a television for 12 or more hours a day. I can see now "hind sight being what it is...20-20" many things that are contributing factors to all of our "hardships", our downfalls, our chronic illnesses, whether emotional, mental or physical that we want to shove under the rug, run to the doctor, take a quick pill, much like running through the "drive-thru" for coffee, we are too lazy to park, get out of the car, and go into a place to get coffee anymore.. our excuse?? We are TOO busy! Well, if you are TOO busy to go inside and buy your lunch, get a donut, pick up a six pack of beer (now that you can even drive thru for freaking beer), then I say you are TOO DAMNED BUSY!
All of the above seems to not have much to do with what the title of this post is, nor does it seem any of it relevant to chronic illness and chronic pain. But, it is all relevant. Our entire lives have evolved, in good ways, I will not say that all we have accomplished is "bad". But, we have also "engineered" ourselves right out of jobs, "automated" our lives into a never stopping conveyor belt of high prices, lower quality items, food that is "tainted", medications that are "tainted", people that are not willing to get up off their butts and do their jobs. If they can't sit behind a desk and be "boss", then they think the job is "beneath" them. Boy, you cannot tell me you do not know those like that. I have met several in my life time so far, and it gets worse everyday.
We will not accept that WE HUMANS HAVE RUINED OUR WATER, AIR, AND LAND!!! WE have MELTED THE POLAR CAPS. WE have CAUSED CANCERS, HEART ATTACKS, AND STRESS THAT SEND PEOPLE RUNNING TO THE NUT HOUSE! Or "self-medicating"... how many do you know that weekly, daily use alcohol, food, TV, video games, being on line in a social media place, possibly other drugs that are not "legal", sex, shopping, spending more money than they make... and the list goes on and on... of ADDICTIONS! We totally rely on so many addictions, whether to food, spending, or alcohol to "prop" ourselves up daily so we can do it all over again in this rat race we call life.
We will bitch, moan, whine, and stomp our feet, of things we do NOT believe are RIGHT! BUT, take action?? IF you can gripe about it, then you can DO SOMETHING! Write an email, a letter, make a phone call, attend a rally... do something other than give these things "lip service". I can tell you right now WORDS with NO ACTIONS, gets you NOTHING BUT FURTHER UPSET AND STRESS! It only leads to more frustration, more depression, more attitude of giving up and throwing in the dish towel of life. So, why are we so in "fear" of voicing how we feel???
What makes us rant and rave "online", but come up to the person, or place, or thing that is upsetting you, and lips are closed, mouth shut, and a "pleasant" face put on... in other words DO NOT rock the BOAT!!! Why??? FEAR???? Have WE as a society that is supposed to be the MOST DEMOCRATIC (I get to where I despise that word... we need a "new" word for those that can give "voice" to their opinions and thoughts, without feeling like you have to "apologize" for what you have done or said. As long as you are NOT HARMING YOUR NEIGHBOR, or causing misery for someone else, you SHOULD BE ABLE TO STAND UP AND SAY HOW YOU FEEL! You should not feel as if your friends, family, doctors, other professionals, anyone is going to "stop" seeing you, not take care of you, no longer "fill" your medications... just because you may not "see" something the same way that another does. WHY are we SO ASHAMED of our own thoughts and feelings.?
We live in enough fear of terrorists, of bombs, of those that shoot people for no reason, of the insanity that happens here daily... we are fighting wild fires,, droughts, and ALL OF THE MOTHER NATURE EVENTS that if we look back in history, MAN CREATED HIS OWN DEMISE. We have ignored our Earth way too long. We have ignored polluting it, of using it up, of covering it up with concrete; then all we can do is "finger point" to who did it? ALL of us! Each and everyone of us are contributors to our own realms of waste, pollution, of the demise of the medical profession, of the demise of our own government. We can bitch all we want to, but WE PUT THEM IN OFFICE! If it is broke, FIX IT! Sometimes the well just runs dry and you have to freaking drill for a new one. And this "well" for our government is dry and getting drier daily.
Ignorance is NOT bliss! It is just plain ignorance. And "denying" all of what is happening, is just sticking your head in the sand and watching for the other shoe to drop on it.
Now onto the "REAL REASON" I am writing this morning... As you can tell, if you are following me here, or on Facebook, my life, as well as my family's life has been in a freaking turmoil now for more than weeks, let's try months. Since January of this year, thank goodness for my spouse, and my Mom, and all of those out there that are "rooting" for my side of the ball game.
I began with what seemed like the "flu". Made sense. After all it was "flu" season. Yet, each day, rather than get better, I seemed to be worse. I began to have pain, and it got worse with each passing day. I developed worse fatigue, muscle aches, deep down in the bone pain, in my legs, my feet, my ankles, hips, and lower back. I was so extremely fatigued, that for weeks, I was literally not able to even drag myself around my drive way to walk, water my flowers, hell I could not even sit at my computer. I went to my regular doctor, my pain doctor, to a neurologist, in fact 3 of them... and had every kind of blood test, EMG, NCS, CT Scans... all coming up with "something" small, that may have "contributed" to the pain, etc... nothing that should cause such massive pain, massive fatigue, and make me feel like I had been just ran over by a bus once or twice. We even questioned my pain pump and went so far as to have the medication completely removed flushed and put new medication back in.
this was already mid-February. We did not know where else to go. I had a couple of doctors that gave me a "new diagnosis". One of which was "myasthenia gravis", and they even suspected Multiple Sclerosis, of which had been suspected on several occasions. This went on until about the first of March. Then one morning, I woke up, and all of the "symptoms" seemed somewhat "better"... each day thereafter it seemed to have a bit better feeling. We never put our finger on the reason why. so in essence I think myself, mu spouse, the doctors "chalked" it up to the "Lupus" and a very bad flare... and the RA, of which the meds were not working as well as they should be... plus I probably did have the flu, and all of it caused that "perfect storm" of illness that raged through my body. What I never did really think about, is in the meantime my pain doctor had "upped" my pain medication when all of the stuff began, and he left it like that. So, possibly I was of course better, other symptoms were going away, but the "pain" could have been somewhat masked over by the increase (change) of pain medication. I got "better", yet I really never got "well". I had other health issues come up, a "myoglobin" issue, that would be a contributor to muscle pain, the RA of course, of which the Humira was definitely not working as it should have been, plus several other things like finding out I had radiculopathy issues, and my lower lumbar spine had definitely done some deterioration in midst all of. Any and all of those things could be combined with my Chronic Lupus/RA issues, to be the culprit of my ongoing new type of pain/illness issues.
Well, the boat seemed to rock a little and put me back in whatever I want to "think" is kind of "normal" for my life. Yet, that was NOT to last long. Come about Mother's Day. I recall it being close to then because I and my Mom were planning to go to the Casino to spend the night. On that Friday before I began to just feel lousy. Again fatigue set in and almost simultaneously, the pain I had so hoped would not return was back with a vengeance. I was definitely in no shape to make even a 2 hour trip to have a good time for Mother's Day, so we decided to postpone and go the following weekend. Well, by then things were already worse. Again, the severe and deep bone pain, in my hips. legs, feet ankles wrists... it was all back once more. This time I went straight to my PCP, getting prednisone injections and a 14 day step down of it, and having them do what they could to "stop" again what we thought was a very bad flare. From there I have battled everything from several of my teeth needing to be pulled all of a sudden, to several cavities, to the double vision I have been fighting for over a year (not one doctor, even the best "neuro-opthamologist") ever figured out why my vision is double., to the excruciating pain I was and this time again it required not only an increase of my oral "break through" meds, BUT an increase of the medication that is in my pain pump. I have spent week and weeks, almost crawling at times around my house, not feeling like even baking something. I have been to my orthopedic surgeon who injected both hips and both elbows that were giving me heck. He feels that my thumbs are too deteriorated to even put medication in, and my hips, and elbows also show signs of further deterioration, which could cause the pain in my legs, hips, lower back, feet and so forth. I am continuing the battle with my own health issues, then week before last I got not only just slapped in the face with, but knocked down with a "suddenly very Odd" "certified letter" from our own Primary Care Doctor. Now this man is wonderful. He diagnosed my Lupus. He had been the doctor who found much of what was going on with me and had been working to "fix" what he could, and sent me to other doctors to do other things to help me feel as well as I possibly could, under my chronic health issues.
This "letter" came while I happened to be at my Mom's and my husband got it. In fact it was for my husband. When I got home, I stepped out to speak with him on our front porch and I could tell by the look on his face, something was very wrong. I had not been gone long, so of course, I was "in a panic" wondering if something happened to one of the dogs, or he had gotten a phone call with bad news. When he began to tell me about this letter, a certified letter he received in the mail, I asked him what he had won? Then I abruptly saw and heard that this was no joke, that this was a serious situation, and after he finished, I had to read the letter and see with my own eyes what he had told me.
It was very formally addressed to him, as if a "stranger" had written it. Yet, this certainly was not a "stranger" at all. This was OUR FAMILY PHYSICIAN that had been our doctor now for at least 6 years. For me, a little longer, because I went to him first. In fact I was probably one of his first 15 patients. He had not been in practice very long at all when I felt like I had found the "perfect march" as far as a family practitioner. Not only did he have an incredible "bedside manner", he is intelligent, he was way educated much more than the usual family doctor, because he tested me and found out things about my health issues that not one doctor in 40 plus years had been able to find.
My Mom was also looking for a new PCP. Her previous one was old, and going out of business basically, so I suggested my new one to her also. She went and also was very pleased. He seemed to be right on top of the latest and greatest. At first, he did it all. There was not any of this referring you to 15 doctors. He tested, found out what was wrong, and with "your" help as an "educated" patient (another big plus in my book, he loved educated patients), he would treat you himself, if possible without sending you all over the country. Again, a small town, with very few PCP in it all the years I was here, this doctor was like an angel sent from above. Things rocked along, and my husband began having issues with his lower back. He does not have insurance. Thus he would be a "cash" pay patient for awhile, until we could afford some kind of policy. But, this new doctor seemed to be much more concerned about "patients" than money, and he charged a very nominal charge to see my husband, he also tried to keep tests, scans, and expensive things out of the picture unless absolutely necessary. So, when my husbands back began to give him more problems other than just the usual three or four times a year, this doctor did a few Xrays, determined the situation was probably something he was born with, and as the years went by, arthritis, and a narrowing of the spinal canal was putting pressure on the main nerves in the lower spine, thus causing horrid pain off and on. Again, we were very impressed. He tried several different types of medications, also treated him for blood pressure issues later, and High cholestral problems, and we were ticking right along, no problems. In fact I had highly recommended him to anyone that happens to be in need of a family doctor.
Well, there was a couple of issues that we had to deal with off and on. One, was the "office manager". He was just an ass, to put it bluntly. He always looked down his nose at everyone. He thought he knew it all, and even though he I am sure is "good" at his job... he is NOT good with people at all. I had more than once complained about his attitude and that I did NOT want to be treated as if I am pond scum. I was certainly not bad about being an overly needy patient, and I tried to refrain from asking for too many "favors". In fact, I really never asked for anything other than a few forms to be filled out in order to get my husbands medication filled for free or for much cheaper than the pharmacies.
This doctor diagnosed my Lupus and RA. He was the one that started me on medications for them, and took care of me, while I tried to find a Rheumatologist with some kind of sense for sure. To this moment, I nor Jim, nor anyone can figure out what the hell went on, and what caused this "sudden" issue, when it is plain as the nose on anyone's face that there was an Error, on the part of their office to NOT tell the Lab to DO THE BLOOD TEST A CERTAIN WAY OR, the LAB did NOT run it the way they were told. Either that, or there is SOMETHING, SOMEONE, is NOT telling me! I know what I see. I know what happens when I am around and there to witness it. But, if I am totally left in the dark about an issue, or something not right, then I cannot make an informed "reason" as to why something like this happens.
Now I do know a couple of "facts". First of all, this business about the government, the DEA, the entire realm of mess in Florida with pain clinics and seedy "quack" pain doctors etc.. has definitely put "fear" into lots of people, along with made a "Good medication" when USED CORRECTLY!, Look like a monster! But, as I said "used CORRECTLY"... IT IS LIKE anything else, if you "abuse" it, then it is Bad for you... or bad for whatever... Then you give "too much power" to some people in a place such as someone over the "legalities" of meds without any governing power over them to oversee what is done, is NOT harming some, and you get a freaked up pile of mess, that THE LEGITIMATE PATIENTS suffer needlessly from! There is NO reason, not one that any person that is truly a Chronic Pain Patient, that has NEVER abused anything, that has lived by their "pain contract", that has "passed" "tests" of whatever, all this time, or been treated like things are totally fine, only to be delivered a ridiculous letter, without any type of warning, without one sit down in front of you and explain WHY this is happening! IF anything is wrong with this, THAT POINT is what is MOST WRONG! WHY NOT have a CONVERSATION AND EXPLAIN this to a PATIENT, rather than take the "unprofessional" and just plain rude way, and not speak to them, not answer their emails, not answer a phone call, not ask them to come in and have a visit, nothing... and then you are also seeing their families??? Now how is that going to go? Like I said above, this situation puts me in such a horrid crack... I am stuck between first of all NOT KNOWING for SURE what is going on, only what I see and know... it puts me in a place of course of being upset, embarrassed, and thinking why should I see them if I could get the same treatment. Down the line a few months, and they stop refilling my medications? And I am not talking about pain medications, I am speaking of medications for my Lupus, my blood pressure, heart and so forth. If this doctor is leaving, or is "mad" at my family, or has something with us that he does not want to treat my family, then he should be professional enough, to just speak up face to face, and tell us what the hell the deal is! If I or my husband, or my Mom, have offended someone, or hell knowing this town, God only knows what kind of stupid "rumor" he has been told... because believe me this town is known for its lying, gossiping, half truths. People do NOT get the entire story, so they "make UP" what they want to... in which sometimes people's lives get frigged up due to a flat out lie being told. Before you open up your mouth when it involves anyone's "reputation" or their "good name", you had better give it deep thought, and then really understand what you could cause. If you are going to "stir up harsh feelings" or cause someone to be "smeared" and you are not sure what you are talking about, it is better to just keep your mouth shut, rather than say something you will harm someone with by being nosy. Small town are noted for that crap. One reason why I did NOT want to move back here... the small town mentality, the gossip, the "whispering" behind your back... those things I just cannot stomach. Since I have been trying now for 3 days to "finish" this and post it, I'm going to say it is "finished" enough to post & if I have further thoughts, I will just add it on and let you know there is a new "piece" under it...
Tuesday, August 20, 2013
Quality of Life - EVERYONE Deserves It!
I am
still so completely puzzled as to why all of a sudden with no warning,
all of this nightmare comes down on patients? Of course we have known
about Florida and all of the "fake clinics", "fake pharmacies... and
even the issue with WG I guess being fined for not watching more closely
about medications and who is getting them. But that STILL does NOT
explain WHY long-term, contract following, knowing
the medical records and health records well, having all the proof in
the world that a patient is definitely "in horrid chronic pain"..
doctors would be under so much pressure they absolutely STOP even
talking to their patients. Honestly, this makes things WORSE not better
at all! MOST patients if sat down and explained to that a doctor must
stop seeing them for the pain issues, but they will continue their meds
for a month, or help them at least step down a little on the meds until
they can get a physician, and tell people WHY in the heck it is
happening, you will get MORE FLIES with HONEY than with VINEGAR!! You
are talking about PEOPLE'S VERY CORE LIVES HERE!!! People in communities
that know everyone, and everyone seems to know everyone else's
business. And if you destroy their "reputation" by making it appear this
person is some kind of pusher etc... how do you expect that family,
that person to walk into their local stores? How are they supposed to
"work" and help make a living, if the pain is so bad they cannot? Who is
going to pay the bills? Who is going to be a "care taker" of someone
they have at home with many severe chronic health issues? PAIN often is
SILENT as far a just "seeing" a person out in public. Pain patients DO
NOT GO OUT when the pain is TOO BAD!!! THEY STAY BEHIND CLOSED DOORS
TRYING TO COPE! ONLY when a person "feels better", is having a "good
day" and the Illness (not just pain BUT OTHER SYMPTOMS WITH ALONG WITH
IT) are not as "obvious"... which makes things worse. If you "do not
look" ill, people assume you are "well'...I ask what does a chronically
ill patient supposed to "look like" in public??? Of course we have good
days, with less symptoms, and we cherish those days. We CAN possibly
make it to buy a few groceries, or pick up our medications. We can walk
around our yards, enjoying outside, we can go see a friend, or go out to
eat... but those days are rare and precious! So, think about when you
see someone you KNOW i chronically ill... I bet there are times YOU DO
NOT see them for days, weeks, even months.... IT is just not pain, it is
severe fatigue, severe stomach problems, severe headaches, brain fog,
fevers, not being able to be around "sick" people. other medications
that may make you feel lousy, hundreds of other issues besides "pain"
that keeps us "hidden" until we have a "feel somewhat human" day
again... The days that you go you do not even feel like taking a
shower.. the thought of just even putting your legs in just wears you
out, the days that you are on the verge of wanting to scream, sit in the
floor and cry, you beg God or anyone to help you, the double vision,
the scars from many surgeries, you can't be in the sun, you can't run,
you can't do things "normal" people do, you do not feel like putting
makeup on, or fixing your hair, or even seeing anyone. Your pale, your
unable to think, you can't even find words to describe what you are
trying to say, you drop things constantly, you can't remember where you
parked, or what your pin number is, or what stores's debit system works
which way. You have to make a list, to remind you of your lists of
lists, you have sticky notes all over the house to "remind" you of
everything. You battle all of the many demons of going to doctors,
taking a handful of pills (not pain but others) daily just to make sure
you don't get thrush, an infection, that your heart works right, that
your anxiety does not get the best of you, that your muscles do not
spasm so bad you can stand it, that the joints that are "not" replaced
yet try and work right... ALL things "chronically ill" deal with. Then
you have those with kidney failure, lung issues, heart issues, and if
you have had a HEART ATTACK then dealing with TOO MUCH PAIN for TOO LONG
can bring on ANOTHER MI! I was speaking with my Mom the other day, and
she talked about an article she read where a woman had been in so much
pain, for so long, and she was just not able to get anyone to help her,
that she jumped off a building. EVERYONE has their own "breaking
point"... Some have strong thresholds, other their thresholds for pain,
anxiety, and stress are much lower... and when you put a person that is
trying their best to deal with chronic illness and do the "right thing"
in order to have some type of quality of life, and you JERK AWAY the
very thing that gives them QUALITY OF LIFE, what do you think they are
going to do? There is going to be an epidemic of other health issues,
the stress and strain on chronically ill patients bodies is already over
the top. Then you bring in more stressors of life, like not being able
to get their proper meds, and that is enough to make them now want to
deal with it anymore... it is harsh, but it is the truth... as I said
everyone has their BREAKING POINT... So, this "battle" is not just about
medications for pain, it is about the very core of giving quality of
life to everyone.. And taking away something people honestly need to get
that much needed quality is just unfathomable at the very least...
Monday, August 19, 2013
Showing My Own Support of the "International Foundation for Autoimmune Arthritis" and the co-founder Tiffany Westrich
http://www.ifautoimmunearthritis.org/Home_Page.html
Please visit the URL above! This is just a wonderful Foundation that is helping by leaps and bounds in the World of Autoimmune Arthritis. The co-founder Tiffany Westrich is just an angel sent to all of us for sure. I want to help all I can to get the site and all of the information about them out to everyone. When you have a moment, visit their brand new website that is above. You can also join them on Facebook to keep up with ALL of their latest ways they are making a difference in the realms of autoimmune arthritis.
Rhia
Please visit the URL above! This is just a wonderful Foundation that is helping by leaps and bounds in the World of Autoimmune Arthritis. The co-founder Tiffany Westrich is just an angel sent to all of us for sure. I want to help all I can to get the site and all of the information about them out to everyone. When you have a moment, visit their brand new website that is above. You can also join them on Facebook to keep up with ALL of their latest ways they are making a difference in the realms of autoimmune arthritis.
Rhia
It Continues to Get WORSE for Legitimate Pain Patients!
http://hometestingblog.testcountry.com/?p=25926
This article is just one more example of how the "few" out there doing WRONG can make legitimate people's lives a living hell. I have seen more stories over the weekend of the very circumstance we are dealing with. IT continues to baffle the hell out of me though, as to WHY a family doctor, who has KNOWN you family for 5 or 6 YEARS... would just NOT SPEAK! No explanation, nothing... not a phone call, nothing but a "form" letter, that he probably did not even sign or read, just sent out like you were some stranger off the street. It is insanity! I know "they" as doctors have their own "reasons" as to why they handle things like they do. I have already went over all of that in my head. BUT!!! IT STILL does NOT make it RIGHT! AND it is the most unprofessional way to handle a patient I have ever seen. Now, due to him being my personal doctor and my Mom's, plus several others I know here in town, WE ALL feel very UNCOMFORTABLE GOING to him... yet after you are an ESTABLISHED patient... that has such a very long medical history with so many complications as I do, thinking about even trying to get another doctor to UNDERSTAND all of my ILLNESSES and treatments... is crazy! Sure they can, but who in their right mind wants to take what "is working", and try to make such a huge change???
If I were a patient that had the "usual" visits. Flu, normal things you go for, blood pressure, physicals, and the occasional stuff, going to a new physician is not that difficult. BUT, when you have SCORES OF symptoms, due to SEVERAL CHRONIC illnesses, trying to "train" (for lack of a better term) a new doctor is a job! It would take a new PCP months and months to even READ MY RECORDS! Much less understand ALL that my current PCP does for me... So, that is another huge issue.... This could be so different if it would have been handled properly. Now I am left in a lurch not really knowing how to handle it all. EVERYONE in that office has acted STRANGE EVEN before the letter went out... to my entire family... and we "felt" something wrong, but did not know what.... and how can I look him in the eye (I am supposed to see him for a follow up on Lupus next week) and in fact have blood work done tomorrow there at the office. If I don't have the myoglobin checked he probably won't refill my muscle relaxers.. see so it runs into huge issues with my own health.
Here is another article that appeared this weekend.... same thing
http://americannewsreport.com/nationalpainreport/my-story-pain-clinics-are-money-mills-8821277.html
This article is just one more example of how the "few" out there doing WRONG can make legitimate people's lives a living hell. I have seen more stories over the weekend of the very circumstance we are dealing with. IT continues to baffle the hell out of me though, as to WHY a family doctor, who has KNOWN you family for 5 or 6 YEARS... would just NOT SPEAK! No explanation, nothing... not a phone call, nothing but a "form" letter, that he probably did not even sign or read, just sent out like you were some stranger off the street. It is insanity! I know "they" as doctors have their own "reasons" as to why they handle things like they do. I have already went over all of that in my head. BUT!!! IT STILL does NOT make it RIGHT! AND it is the most unprofessional way to handle a patient I have ever seen. Now, due to him being my personal doctor and my Mom's, plus several others I know here in town, WE ALL feel very UNCOMFORTABLE GOING to him... yet after you are an ESTABLISHED patient... that has such a very long medical history with so many complications as I do, thinking about even trying to get another doctor to UNDERSTAND all of my ILLNESSES and treatments... is crazy! Sure they can, but who in their right mind wants to take what "is working", and try to make such a huge change???
If I were a patient that had the "usual" visits. Flu, normal things you go for, blood pressure, physicals, and the occasional stuff, going to a new physician is not that difficult. BUT, when you have SCORES OF symptoms, due to SEVERAL CHRONIC illnesses, trying to "train" (for lack of a better term) a new doctor is a job! It would take a new PCP months and months to even READ MY RECORDS! Much less understand ALL that my current PCP does for me... So, that is another huge issue.... This could be so different if it would have been handled properly. Now I am left in a lurch not really knowing how to handle it all. EVERYONE in that office has acted STRANGE EVEN before the letter went out... to my entire family... and we "felt" something wrong, but did not know what.... and how can I look him in the eye (I am supposed to see him for a follow up on Lupus next week) and in fact have blood work done tomorrow there at the office. If I don't have the myoglobin checked he probably won't refill my muscle relaxers.. see so it runs into huge issues with my own health.
Here is another article that appeared this weekend.... same thing
http://americannewsreport.com/nationalpainreport/my-story-pain-clinics-are-money-mills-8821277.html
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I finally made a trip to Urgent Care with what I feel is a very bad Lupus and RA flare, but there are several "symptoms" strange t...
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How can our kids feel safe when WE as adults don't???? I fear Wal-Mart or just walking across the parking lot at HEB in my small lo... -
I really have SO MUCH to try & catch up here on, so I am going ton"Post"n some of my ongoing chronic health issues, things abo...