Thursday, August 29, 2013

Last Entry - I FINALLY realized not one soul cares what I write - and I am a FOOL!

It FINALLY after half my life is over, that I am done, over and a damned old fool. I have spent all my life writing crap that not one soul cares about reading. Why I have spent and wasted time on it, I don't know. I guess we all think we should have something "good" we do. Well, I should stick to crocheting or something at least I have to show for it..

I know no body reads this so it does not matter, but I am also closing down both of my books... I will no longer embarrass myself or my family with them being up... so you no longer have to "watch" me be a stupid idiot... and my posts will not be anymore... if I feel some body else has something to say, I will post their stuff, and give them the credit they deserve... and to my dear friend who does have talent and much that people want to hear... I am so proud of you... you are a beautiful talented woman, with a huge career in front of her... I pray the illness bids itself goodbye so you can pursue even more that touch so many..... Rhia

Wednesday, August 28, 2013

Getting My First Infusion Of Rituxan, Bits, Pieces and Life with Lupus and RA...

Okay, we start here on Monday... :)

Well it is Monday, once again! I HOPE, I PRAY, that this week is NOT like last week! I don't think I can take another one as like week was. You name it, it went wrong, did or did not happen, it was just one of those "Murphy's Laws" entire weeks. What makes it even worse, it continued into the weekend! My medication that comes by mail, that my doctors nurse did NOT get called in, when she was supposed to did NOT arrive Saturday, as we hoped. Thus I ran out as of Saturday night. So, that has not been a pretty sight in the least. What makes it worse, it that she had plenty of time, and for some reason I cannot fathom, she was contrary enough that she waited until Thursday AFTER THE PHARMACY CLOSED to call it in! Well, they are in DALLAS and have to MAIL IT TO ME! I usually do not have any problems, but so happen the woman that does the medication for some reason was not doing it. So, this other idiot, and I could tell she was not going to do anything right, waited too long, thus even though sometimes the pharmacy mails it on one day and due to it being so close (Dallas that is), I get it the next day. But of course they mailed it on Friday, and I did NOT get it Saturday. Now, due to her bull, we BOTH need to be gone at the same time this morning, and someone HAS TO BE here to SIGN FOR THE MEDS! I have a dentist appointment, and Jim does deliver food for the elderly at that time on Mondays. So, if we miss him, I am screwed again. They keep those priority boxes if you are not home until that evening on their trucks until they go back to the office. So, that means I would not be able to pick it up until TOMORROW! So, NOW that is THREE days almost without meds, and guess what??? TOMORROW I NEED TO BE IN DALLAS ALL DAY WITH THE INFUSION!!!! So, due to her "lack of doing her job" she has caused a huge mess for my family, and it was totally unnecessary. It could all have been avoided has she called that script in when she should have. I know she did it on purpose, I could just tell the way she talked to me Wednesday on the phone she had some kind of "bur" up her butt and was being a jack ass, and why I did NOT know. I never have this problem with the other woman. I call my meds in at the same damned time every month, so it was not early... they tell me to give them 5 days due to it having to be mailed... thus if I was to run out this past Sunday, then even Tuesday would not be too early. Then they could have done this Wed. as she should have, no harm, no foul! It is just another one of those many instances, that this did NOT have to happen. But, someone decides NOT to do what is right, thus what they do not know is that they put a "kink" in several other people's lives. If something happened and that package is "lost" or went to a wrong address and so forth, that means more hold up, because the pharmacy will have to research that, find out where it went, and in the meantime send mine again! Hopefully if it is lost the pharmacy usually takes it upon themselves to bring the medication to me. Still it is ridiculous for her not to do what she was supposed to for whatever silly reason she has... Alas, I HOPE my week is NOT like the last. That was just ONE of the million issues that were not pleasant last week.

Post below from (Tuesday) early am Yesterday....

Do I laugh, or do I continue to wonder if "Murphy's Law" is still on my side for the week? Well, I changed my dental appoint from 11 am to 3 pm yesterday. Jim delivers food on Mondays to some elderly people, and he has to be gone at 11:00 (which I had forgotten when I made the appt weeks ago). But, he could have dropped me off, then picked me up. So, that wouldn't have been an issue. BUT, due to the fact that MY MEDICATION did NOT come in Saturday (and by the way, I got the tracking number, and it was send "1" Day Priority Mail and supposedly "free" Saturday Delivery) so why it did not come Saturday I am not sure. I do know my tracking it, for some reason, it did not go to the main postal service area in Dallas until 10:00PM FRIDAY night! Why I am not sure. The pharmacy called me on Friday early afternoon, around lunch time and said they were sending it out right then. They have pickup several times daily for meds that go out Priority Mail. Anyway, so I get the tracking number, find that out, and still it did not show it would be "out for delivery" yesterday, and if so, I KNEW, and would bet my "bottom" dollar if BOTH of us were GONE at the same time, the MAILMAN WOULD COME EARLY!! He NEVER comes until at least 1:00pm, but if we would have been gone even 15 minutes, then I can guarantee I would have been screwed again. So, I changed my appointment luckily they had another opening at 3pm yesterday. Which sucked also, because my entire mouth was still dead at dinner time, and I did not get to eat really anything. Besides the point, the MAIL did not come even BEFORE 3!!!! LOL! I knew then it was "out for delivery" but of course now the mail is "late" compared to the usual. So, I go onto the dentist, and Jim calls me about a minute before I was called in and said well, your script IS HERE and then we were expecting something from his client that came in also... so good news on both of those... of course in my head I thought "well they probably have the wrong medicine in the box and it belongs to someone else)... LOL!!! Anyway, I get home, all is well, and my meds are FINALLY HERE. NOW this started LAST TUESDAY! And if "she" would have just got the script in Thursday during the DAY, while the pharmacy was OPEN, all of this could have been completely avoided! By the way, I DID CALL the doctors office, and tell the office manager (who I know very well), what went on. As I told her, I DO NOT LIKE to gripe! I prefer not to have to say anything, but I felt it was very important NOT just FOR ME, BUT for OTHERS as well! Anything can happen, scripts get accidentally not called in, or mailed wrong, or the pharmacy be out of meds for one day, etc... so cutting it "too close" is just as bad as filling it "too early"... as far as patients are concerned. I did NOT want it early... I just wanted it ON time! That was my gripe. Then I did explain a little (even though I told them it was beside the point) the her actions, or LACK of actions, caused us more issues for this week. Me having to scramble for one of us to be here to sign for the package, maybe not getting it then, and not being able to pick it up today, because I have to be in Dallas at 8:30 am for the first Rituxan infusion... and that is an all day ordeal I am sure... at Least 6 hours, and I am sure more like 8 being my 1st time, and by the time things are set up, etc... and so forth. So we expect to be in rush hour traffic going and coming home probably... It was just something that did not need to happen, and causes "grief" that was stupid... anyway, so I knew my Mom's GLASSES were also coming in. Well, I called her fairly late in the afternoon and they had not come yet. My mailman sometimes is the same one as hers so I thought I bet he is running late for her also. She calls me fairly late yesterday evening, to tell me her glasses arrived! I asked her how she likes them, and she says, well, fine EXCEPT I CANNOT SEE OUT OF THEM AT ALL!!! I of course said "what"???? She told me she sees out of her old ones much better... dammit, here we go again!!! So, as I explained, there is a 100% money back no questions asked guarantee for the first 10 days, and after that they give 50% for the next 30 days... but we do not know if it is on "their" end or ours... I DO KNOW that I did put the script in correctly! I have already checked that out. But, when I was putting it in, it just seemed "not complete" to me. I kind of wondered at the time, if it was correct. But she has had cataract surgery, so I know that "helps" vision a great deal. Yet Mom had been almost "legally blind" with a terrible astigmatism since she was born I guess. I have one but not as bad as hers. So, when JIm and I looked at the script this morning, we still feel by looking at it, sometime is not right. I think the doctor either messed up, put something in the computer wrong, gave her someone else's script etc. So, I will have to find out Wednesday. But, it is so disappointing for us. Hers were not "right" at the "final inspection" a week ago and the had already "remade" them at 39dollarglasses anyway. So that already delayed her getting them a week or more. Now after ours are so great, hers are not right at all. Talk about what will happen, DOES happen! So, once again, I am in the middle of yet another problem, that more than likely is someone else's mistake. Maybe it was an "accident", but it sounds more like someone did not do their "job" correctly to me. We shall see. I am taking her old glasses, and the new ones down to be checked to see if they are anything alike. Her eyes had not changed that much, thus they should be pretty close to the same script. That is my story, and I wished I did not have to stick to it...
 I posted this one also yesterday on Tuesday before I left for the infusion...
I posted about the infusion taking place today, in the post below. Since that one is all about everything else also, I thought I would post it separately. Please keep me in your thoughts and prayers today. I have never had this kind of treatment, thus I am a bit nervous. Plus with everything else as of late, my nerves are already worn extremely thin, so I am just a basket of a nut case I think It is for the Rheumatoid Arthritis... and it is taking place of the Humira injections I had been on for about a year now. After my Orthopedic surgeon took Xrays, and saw my hips, thumbs, elbows etc. continuing to show degeneration, and my Rheumatologist also feeling we need to try something else, this is what we came up with. It was his suggestion. He suggested this along with a couple of other things, but this one made the most sense. I ONLY take it TWICE now in two weeks, then I get to wait 4 to more than likely 6 MONTHS, then I take two more again, two weeks apart!!! So, this is really a great deal of relief of not having to deal with this weekly, especially if the Rituxan works. I am a bit nervous of a few of the "side effects" but I will be in the very best medical facility in Dallas, with my doctor just a couple of floors away, and three hospitals right there, so I feel assured I will be fine. I gather they give me some medications before the Rituxan itself, so I don't have problems with some of the side effects, which is great! I probably won't get back feeling like getting on the computer tonight. I imagine even though I will be just reading or something, I still will be worn out.. so you will hear from me probably in the morning. I can get online there, so if I do, I'll try and jump on FB and say hello!!! Thanks each of you for your friendship and caring.
(Post from FB to some of the ladies in one of the groups and some of my friends... but also out to each of you that I may not even know are also keeping your good thoughts going for me.... )    This was this morning... below...

I am so totally touched by all of you! Sometimes we just don't know how many's lives we touch, and come in contact with online, and how important of a "bond" we build with each other. Thank you everyone! I feel it was all of you, that got me through yesterday. The power of prayer, along with the bonds we share can definitely reach up to heaven, and give us victory many times over what ever we maybe facing that is not pleasant. I see it from the "well-wishes" and prayers right here. :):) I must say the infusion center was absolutely perfect! We walked right up to the desk, they already had all of my paper work done and ready. All I did was sign two forms. From there we did not even get seated good, until a nurse came and got me to take me to the back. Each room is small but neatly done in a way there is enough space for the patient, room for a guest, and then the nurses have space they can work, setting up the IV's and so forth. It was just a very pleasant experience from start to finish. The nurses were so cordial. Each one of them with a smile on their face and constantly asking me if they could get me something, asking me how I felt, they went over each thing they did as they did it, & just were as nice and pleasant as they could be. I know there have to be days, like ours at times, they just may have their own issues for nothing, but they certainly keep it in check if they do. Again, it was a very positive day for us for both of us. My husband sends his thanks you's and really is also so humbled by your thoughts, well wishes and prayers. Anyway, It took about 6 hours as they had told me. Once I was "hooked" up they have me medication through the IV to help keep side effects to a minimum, and two pills also. Then they started the Rituxan and it was 5 hours also to the minute when the bag finished. So, far, so good. I really have not felt any "side effects", other than I was just exhausted by the time we got home. But, that may have not actually been the medication, but just a combination of getting up at like 2:00am, neither of us could sleep, and then all of the stress with the infusion (just the not knowing since I had never experienced one before), and the rest of the mess that has happened over the past two weeks. It is like all of it has begun to sink into my brain and soul. Thus, the "anxious" feelings sometimes follow what really has happened. I can go through something that is really stressful, and think okay, well I am a little stressed out, but this is not too bad. Yet, two weeks later after it is all over, then I get the anxiousness surrounding the event or events. My stomach seems a little bit queasy this morning, and I did not sleep but two hours at a time. They have me a Solu-Medrol VI solution med first that took about 30 minutes. That is one they say helps alleviate some of the side effects, plus in about 3 days you get that :boost: of energy that comes on a couple of days after the medication. That sometimes keeps me from sleeping, thus it was sleep a couple of hours, get up for a couple of hours, all night long. Other than that noticing the movement disorder just a bit yesterday about 45 minutes before it through. I am a little shaky this morning I can tell, but all of that is to be expected. So, I am happy with all of that portion of this medication. Now if I see some results as far as reduction of pain, swelling, inflammation and so forth, then that will be awesome. The very MAIN thing I am looking for is the slowing down of the degeneration of my joints. IF we see evidence of that either slowing down or halting that, I will be in great shape at least mentally.... Again I want to thank all of you, and continue to pray we see some results over the weeks to come. Of course with this kind of medication there is always a very small chance of developing a certain side effects that are not all that great, like a certain type of cancer, and a couple of other ones that are not something you would want to have to deal with. My Rheumy said he has never seen a case where anyone developed any of the other side effects later, like the bad ones. So, the chances are definitely minute against what the medication can do to make me better for sure.

I have to laugh just a bit at myself today and actually at my Mom. I think I had already mentioned her glasses came in day before yesterday. Well, she called me and said "something" was wrong. She just could not see out of them at all, and saw out of her old ones better. So, I went and looked everything up, and I had the script correct in the system. I knew that the online place we bought them did redo them before they even sent out the 1st pair they made. On their final inspection something did not seem right to them, so they remade them. With that it was hard for me to fathom they made them wrong, since they are so particular on that final check before they mail them out. Anyway, my thought was the doctor had her script wrong. It appeared "odd" to me when I first picked it up. I just felt like they "left something " off of it, or maybe it was not really Mom's script at all. The print them now off the computer, so anything could get mixed up. So, this morning (and it is Mom's 78th birthday today)... I call the eye doctor, and so happens they are here today until noon only. So, I call Mom, Jim talks to her first and wishes her a happy birthday... then I get on the phone and begin to tell her we need to get going, so we can go to the eye doctor take the both pair of glasses and the script and find out what the deal is... well she is stopping me, saying on No, forget it. She says she don't know what it was the other evening, but she decided to put the glasses on again yesterday... and that she can "see" fine out of the new ones!!!!!  LOL!!!! I am not sure what happened. I think it was late in the day when they got delivered. She was already tired... and she did not think to keep them on long enough for her eyes to adjust to them. He did not change it much, but I know he did tweak her script some... anyway, now she says that are fine... and she is going to leave them as is... OMG, I just sometimes want to scream... cry... laugh or hit something ;)... anyway, as long as she CAN SEE is what I told her... do NOT keep them if something is wrong... because that is silly... they will redo them for 100% guarantee... anyway, I have not even seen them on her yet, but I am going over there later this afternoon so I will then. Yesterday before they began the infusion of Rituxan, they gave me a 30 minute infusion of Solu-Medrol. That is so they can lessen any side effects that might go on and they also give you a Zyrtec for any type of allergy thing like possibly itching. In fact they gave me a Tylenol, and I guess possibly some may get a slight headache from it. As she was getting the Solu-Medrol going, she asked me if I had it before and of course I said YES!  She said well you know then it may make you have a hard time going to sleep for a couple of days, plus it actually will make you feel "better" ... I said more like "hyper",,, depending on what dose.. and it must have been a rather large dose, plus it went directly into the blood stream through the IV, so it hit me rather quickly. When it is an injection into the muscle, you don't get it as quickly, plus you don't get it as much, as doing it in the IV. So, last night I was wide awake every 2 hours, which for me is really nothing unusual. But, boy talk about feeling like I could jump over the moon!!! I am just fidgety today, and my mind feels like it is going a hundred miles an hour, and I just feel inside like everything is jumping around. Anyone who has injections sometimes of any type of Prednisone, knows what I am talking about. When you get a large dose like that, during a flare, etc... it has a tendency to "hit" you almost like "speed"...LOL, and being that I don't remember having it via IV before, or if I did it was when I had surgery etc... so I would not have really noticed it, it makes you feel almost "invincible"... you just have way more "mental" stamina, and even what feels like "physical" stamina than you really do... So I feel like "super woman" today! LOL!!!! :) If someone could "bottle" this and sell it, without all of the horrible side effects that these corticosteroids cause, they would be very, very rich people. Alas, it does have some horrid side effects if you must be on it for the long haul, especially in larger doses than anyone cares to think about. So, until someone can think of a way to take out what causes the bad stuff, the good feeling only comes every once in a while when you have a procedure like that and need it for a certain medical purpose. We have no "major" plans for the holiday weekend. We may grill some steaks "Rib-eyes" over the weekend. One of our markets has them on sale for a great price, and last time I bought them at that store, they were awesome! So, that is probably our huge "outing" for the holiday weekend... for those of you out and about, whether traveling, boating, rafting, or whatever you may be doing, please take care and be safe, if outside take care in the heat, and watch out for the idiots on the roads... more later, Rhia

Great Articles How Lupus effects the Body, RA Myths,

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.

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...

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...


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

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!


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..


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...

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

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.


It Continues to Get WORSE for Legitimate Pain Patients!

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

Wednesday, August 14, 2013

Updating how the "Wolf" can "eat you alive" when it wants to....

I am not sure whether to laugh, cry, scream, be quiet, fade away, burn brightly or.... to just fall off the mountain top... and say to hell with it all. I guess I CAN FATHOM that others have just as MANY STUPID "Life" issues as myself and my family do. I have open eyes and an open heart to so many that are out here suffering in one way, the other... or several! Health issues, money issues, raising kids, jobs or lack of them, the rage, the horror, the outlandish behavior of other so-called "humans"... all frightening as have ever been. Mother Nature has put a "hurtin' on so many across our own nation, and furthermore across the world, even just trying to "digest" all of that is almost impossible. Droughts, fires, severe flooding, pests of all kinds, tornado's, hurricane's, high winds, hail the size of baseballs... I mean everywhere you turn, either some home is falling in a "sink hole", or things are so bone dry, all you see is dust. Then you look at another state, and they are so totally enveloped in floods that cars are floating down main street USA! How insane is that? Then the fires... it is just so difficult to watch, thousands upon thousands of acres of land burn up, and people lose everything, even their lives. Then we have the latest of a barrage of "transportation" evils. Trains, planes, huge buses full of people, all wrecking, reeking havoc for hundreds across the world. It seems every day you turn on the news, or read it online to see once again, yet another bus, train, plane, or even a 50 car pileup has completely blocked off major highways everywhere. That is just a "few" of our MANY, MANY dire straits of issues that as plan American folks, and Plain World people that we deal with daily. The pain, the suffering, lack of clean water, of food, of places to live, of money, of medications (how the HELL can WE as the "great" nation we are supposed to be running OUT OF SOME MEDICATIONS???? I am sorry but that sounds absolutely ludicrous. Look HOW MANY Pharmaceutical companies we have, and a pharmacy on EVERY CORNER even on all 4 corners in many towns, yet we CANNOT KEEP A INVENTORY OF MEDICATIONS WE NEED???? NO, more like if they cannot MAKE A FORTUNE ON IT, they "CUT" OFF THE SUPPLY... in other words , GREED!!!!! This is not including the RIDICULOUS RED TAPE MESS, our Insurance companies, hospitals, clinics and doctors are in... along "in bed" with the pharmaceutical companies, that bunch in Congress, that have their own agenda and the "lobbyists" that contribute to fuel the GREED of this nation! Every time I think about HOW SOME FOOL BEHIND A DESK can TELL ME WHAT I NEED MEDICALLY AND DO NOT NEED MEDICALLY OVER MY OWN PHYSICIAN it BURNS ME TO NO END!!! What the hell do we have physicians for, if some pencil pushing, not caring if you die, person, that does NOT even know a medical term or what the name of a medication or procedure is, much less what it is for, tell US and our DOCTORS what to do??? IT is one sad damned day in America, that is what it is!!!! OF course, then you have the entire other side, of those doctors, hospitals, and so forth that are just as screwed up as the people behind those desks. Never in my 53 years here have I ever seen a bunch of incompetent jack asses trying to half do a job that they have no clue about. I am not A GENIUS BUT!!! I can tell you that myself, along with MANY, MANY of US know more about the world of MEDICINE AND HEALTH, more than some of the nurses, and others that are supposed to be "taking care" of us!!! Talk about scary!!! It is down right a nightmare if you think about it.... Now, I am NOT one normally to be down and out about everything, but this past 8 plus weeks for myself and my family along with a few of my good friends have SUFFERED WAY TOO MUCH... and yes I QUESTION WHY???? I try NOT to question things, and to realize life is what it is going to be. We have SOME CONTROL, but many times we have very LITTLE OR NO CONTROL, when it comes to life and it's good, ugly, nice, down right hellish, and indifferent. I have literally spent HOURS AND HOURS ARGUING WITH People because THEY DO NOT DO THEIR JOBS! Sending myself, or my Mom bills that they DO NOT file RIGHT WITH THE INSURANCE COMPANIES, then EXPECT US TO PAY! That is bull! File it right, you WILL GET PAID! But, I do not think there has been ONE CLAIM THIS YEAR, THAT HAS BEEN FILED PROPERLY! Every doctors office, the hospital, the pharmacy, you name it, has filed something wrong, then tries to collect from us!!! If they would just do their jobs RIGHT, then it would take SO MUCH STRESS OFF OF US!!! IF I WANT TO FILE MY OWN INSURANCE THEN PAY ME AND I WILL DO IT RIGHT THE FIRST TIME!!!

I do question the entire process of "why BAD things have to happen to the "best" folks???? It makes no sense to me these days. The greedy, the ones that could care less about their fellow man, that treat others like trash, that live their lives in a gutter so to speak, seem to "breeze" by...  Only to have those of us who, DO GIVE a damned about others, we try and treat people with kindness and compassion, we do NOT live our lives as if we were the only people on the planet, we work, pay our bills, and do all of the "right" things, seem to be hit the hardest with illness, pain, suffering, stressful life situations, and we do NOT DESERVE IT! A dear friend of mine is going through a horrible time fighting the big "C" word again. Bless her heart, she already did that at a very young age, back when we were just youngsters, and she won the battle. NOW, here she is years later, battling the monster again. She is the kindest, sweetest, compassionate, gentle soul, that takes care of her family in every way... and she just does NOT deserve to go through this again... no way, no how.... yet here she is having to once again walk through the hot coals of chemotherapy, and yet still trying to put on a happy face and work! It breaks my heart honestly. I also had a girl I have known since I also was in High School that I saw about 3 weeks ago. Her family and my family were close during those years when we were kids. Our Dad's worked together, we went on weekend trips to the lake together, they hunted deer together... and now her Mom is going blind from macular degeneration... and if that is not bad enough, the woman, who is several years younger than me, has Parkinson's! We are talking about someone in their mid-40's!!!! What makes that even worse, and I did not know it until I saw here a couple of weeks ago, she lost her husband last year to an aneurysm, as they were driving down the highway, he died right there beside her in the passenger seat!!!! Talk about wondering why?? Her Dad already has Alzheimer's, and honestly I think he may be so bad he is either in a nursing home, or he may have passed away, but I was so taken aback by all of the other things she told me, that I felt uneasy even asking. Even though this is a small town, sometimes since I don't get out all the much, I miss out own things going on to others.

Pieces of me feel like they are just "floating away" these days. I feel as if the very "substance" of my own heart and soul that I have walked in, with faith as much as I can, has just taken another road, journeyed away from me... and pieces of that are also my "voice" that has always given me the "right words" to write... it is like that "voice" has been silenced by too much of life's horrible drama. I so looked forward to possibly putting out my 3rd book in a year or so, but now I question whether that will EVER COME TO PASS AT ALL. I truly felt that I had SOMETHING TO GIVE TO OTHERS, through MY WORDS FROM MY HEART, yet somewhere down the line, "my" plans have been altered... so I am just not myself these days... I feel as if I am SOME OTHER person... I do not even recognize myself anymore... not so much in a "physical" sense, but in a sense of "the core center of who I was"... that seems to have "left the building" as that old adage goes.... much like "Elvis"... who I was, seems to not be who I am now... I can "blame" it on illness, pain, drama, life's little nightmares that can change your entire outlook in the blink of an eye".... some good, yet for me, I see it as not good at all... where it that writer, that "creative" entity... I miss her... I miss "Me"... I spend more time trying to "get well" that I spend being "well"....

I have FINALLY my Rheumatologist's Appointment this morning!!! HOOORAY!!! I pray he can help, and he usually does. I have missed not seeing him in over 6 months, so I cannot tell you how LONG MY LIST IS FOR HIM!!! There is LOTS AND LOTS OF FLOOD WATERS that have flown under my bridge since he saw me last. I DID email him some of my issues, and some information last week. I felt the MORE he knows BEFORE I get there, the more fruitful our appointment will be. Alas, I just hope we do have enough time to discuss all that is happening. I believe from an email I received back from him last week, I will be going on an infusion of Rituxan rather than the Humira. Or I gather I will stop the Humira, and only take the Rituxan. I pray it helps to reduce all of this pain, swelling, and mainly damage that is happening from the RA!!! Then I have lots of other things like those two other osteoporosis medications I found out about last week, I want to discuss. If I can take them, and have a chance of doing anything to remotely halt my bones from growing any weaker than they already are, then injections it is. I already take them anyway, so I might as well as 2 more in, that is if it is right now me. Of course there is all of the other pain stuff, joint stuff, and the list is endless to kind of go over... but if we can get at least the RA meds changed over to something else, and get me on those osteoporosis meds... plus I am sure he will have some answers on other things for me... I will be happy...

Then tomorrow, I go to the "foot" doctor... she is taking a look at my big toes, ankles etc... and we are going to see if I need "tarsus tunnel" surgery in my big toes... from the tests it appears that night help so we shall see... From there Friday, I go to have a CT scan on both hips... yes, that one will cost out of butt... they now charge a fortune even with insurance for the damned things... but since my hips seems to be so sore, and giving me hell even after the injections a couple of weeks ago, it could be they are causing lots of the issues I have with my lower back, legs and hips.

AND if things are not bad enough!!! I FOUND OUT MONDAY, that this TOP FRONT TOOTH, THAT GOT busted off half in two in the 4 wheeler accident when I was about 25, is now loose, and has enough decay, that it is no LONGER PATCHABLE!!! My dentist had to tell me I am going to be looking at a ROOT CANAL AND CROWN! I almost DIED, FAINTED, PASSED OUT, AND FREAKED, when I called for A PRICE FOR THOSE!!!!! How the HELL DOES ANYONE AFFORD A ROOT CANAL AND CROWN!!!?????? Lord have mercy, that is like buying a damned car!!! I do not know what I will do on that one... the "cheapest" I found was about $1,600.00 FOR BOTH! I called even "Monarch Dental" and hell they wanted something like well over $2,300.00 OR MORE FOR THE TWO OF THEM!!! Hell I thought they were supposed to be "discounted"... It is insanity... but I have NO PLACE to have a "partial plate" to Hook onto, due to my bad teeth that have just been pulled in back due to the Sjogren's... and I was told if I had them all pulled, the Sjogren's would also cause me grief with a plate... due to the dry mouth... so it is damned if I do, and damned if I don't... I am just baffled over that one...

Well, I shall just stop for now... lots of other stuff I could go into, but I want to get some other stuff done today, since I will be once again in and out the rest of the week with tests and doctors... damned I am over sick of it all... Hugs to all... thank you everyone for your compassion, kindness and friendship.... Hugs, Rhia

Monday, August 12, 2013

When a "good" situation goes HORRIBLY wrong - finishes up from FB posting....

It is from his personal doctor, who he has been seeing now for over 5 YEARS... maybe more... almost since we got to TX.. and we got here in 2005... well, basically, due to THEIR ISSUE, WITH NOT DOING A PROPER TYPE OF LAB WORK!, they arbitrarily decided to send him a KISS OFF LETTER... BASICALLY... in other words... because the "lab work" was DONE IMPROPERLY, rather than checking it out TO FIND OUT WHY IT WAS "NOT RIGHT"... THEY send him a letter, saying "I WON'T SEE YOU ANYMORE"... NOR PRESCRIBE YOUR MEDICATIONS YOU NEED! Now WHY in the HELL would ANY PHYSICIAN with ANY GOOD RELATIONSHIP with a LONG TERM VERY WELL KNOWN PATIENT, THAT has been there forever... and DOES TO THE LETTER whatever this doctor asks.... AND PAYS CASH.. he has NO INSURANCE... just decide NOT TO TALK TO YOU..Not to have you come into the office, JUST HAVE SOME CERTIFIED FORM LETTER SENT TO YOU ON A FRIDAY, so the OFFICE IS CLOSED... and ALLOW A PATIENT TO NOT ONLY BE TORE UP, DISMAYED, PUZZLED, AND ASKING WHAT THE HELL IS GOING ON???? It is BEYOND ME! It is INSANITY!! I do KNOW... THAT THERE IS SOMEONE IN THE OFFICE, THAT DOES NOT care for "us".... and I also know they can be in a position to CAUSE MAJOR ISSUES, due to the position that they play at that doctors office... and it would NOT surprise me IF THEY DID NOT HAVE SOMETHING TO DO WITH ALL OF THIS... Need less to say, IT HAS CAUSED Jim MORE GRIEF TO THE PLACE HE HAS ME HORRIBLY WORRIED... he is BEING ACCUSED TO SOMETHING THAT IS NOT ANYTHING BUT A HORRID LIE!!! AND A JOKE... but IT HAS BEEN TO THE PLACE OF BEING SO UPSET on TOP OF MY OWN ISSUES WITH HEALTH, that I fear I am going to have another HEART ATTACK!!! I am beyond with words upset over all of this... I FEAR EVEN POSTING THIS... because I KNOW THIS TOWN TOO WELL!!!!! (and we are talking about medications that Jim needs... blood pressure, cholesterol, (Anti-depressants, his stomach meds and the meds he takes for his lower back, that without he cannot work!) After all of the research I did online, I found out, that WE PAID FOR THE RIGHT TEST! and these results have been in now for 2 WEEKS... yet we just get this stupid letter this past FRIDAY! WHAT IS UP WITH THAT?????? We have copied documentation from several sources, he has written a long letter about this entire ordeal, attached with the "lab work" done wrong (and it even says it was NOT done as it should have been), and taken it to this office today)...  Please continue to pray for us... this is just not good at all.... We KNOW what WE ARE DOING IS RIGHT... but a doctor can make or break you... if they want... or someone else in their office with the "right" or "wrong" power... can make your life a living hell....

Saturday, August 10, 2013

Grand Showing over the next couple of Nights! The Perseids Are Back!!!

The Perseid's are back! They are supposed to  be spectacular, and peak on Sunday and Monday with 100 or more an hour! Thought I would share some information for those of you who are night owls and might enjoy the "show".... Meteor Showers

45 Tips for Life (saw this in FB and wanted to share)

I saw this in FB just a little while ago in one of my groups, and it just seemed to "fit" after the week from hell I, along with several have had... thought it might help you also get through a rough patch of the "stickers" of life... :) 

45 Tips For Life

1. Life isn't fair, but it's still good.

2. When in doubt, just take the next small step.

3. Life is too short – enjoy it.

4. Your job won't take care of you when you are sick.
Your friends and family will.

5. Pay off your credit cards every month.

6. You don't have to win every argument.
Stay true to yourself.

7. Cry with someone.
It's more healing than crying alone.

8. It's OK to get angry with God. He can take it.

9. Save for retirement starting with your first paycheck.

10. When it comes to chocolate, resistance is futile.

11. Make peace with your past
so it won't screw up the present.

12. It's OK to let your children see you cry.

13. Don't compare your life to others.
You have no idea what their journey is all about.

14. If a relationship has to be a secret,
you shouldn't be in it.

15. Everything can change in the blink of an eye
But don't worry; God never blinks.

16.. Take a deep breath.
It calms the mind.

17. Get rid of anything that isn't useful.
Clutter weighs you down in many ways.

18. Whatever doesn't kill you really
does make you stronger.

19. It's never too late to be happy.
But it’s all up to you and no one else.

20. When it comes to going after what you love in life,
don't take no for an answer.

21. Burn the candles, use the nice sheets,
wear the fancy lingerie. Don't
save it for a special occasion.
Today is special.

Over prepare, then go with the flow.

23. Be eccentric now.
Don't wait for old age to wear purple.

24. The most important sex organ is the brain.

25. No one is in charge of your happiness but you.

26. Frame every so-called disaster with these words
'In five years, will this matter?'

27. Always choose life.

28. Forgive but don’t forget.

29. What other people think of you
is none of your business.

30. Time heals almost everything.
Give time time.

31. However good or bad a situation is,
it will change.

32. Don't take yourself so seriously.
No one else does.

33. Believe in miracles.

34. God loves you because of who God is,
not because of anything you did or didn't do.

35. Don't audit life.
Show up and make the most of it now.

36. Growing old beats the alternative --
dying young.

37. Your children get only one childhood.

38. All that truly matters in the end is that you loved.

39. Get outside every day.
Miracles are waiting everywhere.

40. If we all threw our problems in a pile

and saw everyone else's, we'd
grab ours back.

41. Envy is a waste of time.
Accept what you already have not what you need.

42. The best is yet to come...

43. No matter how you feel,
get up, dress up and show up.

44. Yield.

45. Life isn't tied with a bow,
but it's still a gift."