I was given a "press release" that I am very proud of ;)m- Goes to show ANY Advocacy Work is well worth doing especially for Chronic Pain and Illnesses

I've really been down and out lately at the numbers that are coming to my blog. Used to I would have at least 75-100 and sometimes 300 or over. But, over the past 4 months, even before I went into the hospital I noticed a huge drop in those coming to my blog.

I know "Google" have changed a great deal of their SEO stuff, BUT, I have many of their ideas and recommendations that I use. I've not went through the entire "book" of recommendations, BUT, I usually post everyday, sometimes more than once. I do miss sometimes, such as when I was "out of pocket" due to the hip fracture, but even then I still posted once I was feeling a bit better and had my laptop to post to all of my social media places.

The one thing that I have not done "much" and continue to try and not do, is get too deep into the "political" issues that are invading our lives DAILY! I know many are like myself and HOPED that AFTER THE ELECTION some of the DAILY CRAP WOULD STOP!

Well, I should have known much better than that. With the "Donald Duck" elected LOL, there is NO way to SHUT HIM UP NOR the NEWS. Everything he does, tweets, says, posts, and probably what he eats for his 3 meals a day are NOW LARGER ISSUES ON THE NEWS, THAN THE ELECTION!!!!!

I am SICK TO the point of NAUSEA hearing about "The Duck" this, that and the other.... I cannot even "type his name" it makes me so ill to see or hear about one damned thing he does.

I was a "voter" and I've voted for many years, without missing many. Of course I feel if we "vote" then we do have a right to GRIPE! But, for those WHO DO NOT VOTE, then you do not have the RIGHT TO FUSS because you did not allow YOUR VOICE TO BE HEARD!


I KNOW that my "typical" daily life may not interest you. thus I "try" my best, to put something useful, fun, information that you can use, new items from The Arthritis Foundation, to WEGO, to other health and human information especially for us that remain all too ill, from Chronic Pain and/or illnesses.

I am HAPPY that although I had TWO HIP FRACTURES, now in 3 days it will be 90 days since that 1st surgery, and I am doing very well. Even without a cane, and in fact, I left it at home yesterday and did not even take it with me.

I realize at times, I am still leery about being almost too cautious, in fear that another fall could even be worse. I also am in fear that if I don't try and do all I can to "never cure" the osteoporosis, BUT try and build "muscle" and "put protein" back into my body, I have a far better chance of not being a "fall victim".

The woman that was in the room at the Rehab place with me for part of the time, had already been in the hospital like 3 times BEFORE CHRISTMAS, IN LIKE 3 MONTHS! She had pneumonia a couple of times and was put in for that. She has also been a "Diabetes 1" victim since being a teenager, which I watched even after all these years, especially without a proper diet like she should have had in Rehab, she was always having way too many problems with her Diabetes. Then she had fallen and been in Rehab before Christmas I guess in August or September, then fell broke her pelvis, WHICH SURGERY OFTEN CANNOT REPAIR A BROKEN PELVIS, thus you have to spend WEEKS AND WEEKS IN BED TO ALLOW IT TO HEAL ON ITS OWN! Her pain had to be horrible. I know HOW MUCH PAIN I WAS IN WITH THE FRACTURES TO MY HIP, and I was yelling, screaming, cussing, bitching, crying and my entire neighborhood probably thought someone was attacking me, or I had just lost the rest of my mind. MANY of them came when they saw my son's vehicle here to ask what happened, that I was SCREAMING AND CRYING SO MUCH, they could not imagine what had happened. No one I guess heard me screaming and yelling and crying, while I was still in the house for over 3 hours, being too stubborn to call the ambulance. I "hoped" I had a "bad bruise" NOT a damned brake to my hip. But, alas dammit the news was worse, because I had TWO breaks in it.

I cannot begin to even express "ALL I LOST" in those weeks and weeks, through the surgery, through being an inpatient in a Rehab Center, from my own self-esteem, pride, I felt unworthy, useless, a burden, and just a totally screwed up person to be going through this and making my kids go through this also.

LOTS played into my issues with the entire thing, because of losing Mom to Lewy Bodies Dementia in June of last year, and having to take care of her, the 6 months prior, I was already more than behind on "caring for me"... I cancelled neck surgery at least 4 times, and just put my RA medication on hold, since I just felt I COULD NOT leave and go to Dallas for a few hours.

I AM STILL trying to "clean up" everything that needs to be done, and actually am totally confused, because I feel I did not "grieve" enough before trying to begin taking care of other affairs once she past away, that now I get to a place I am not sure what, what not, which, how, is done, not done, and my own "Christmas Present" to myself, is still sitting in my hallway, along with the new rug for my living room. But, now with the hip thing, I fear trying to turn the old sofa over in order to get the backs off of it. That is what has to be done, before it can be taken out of the house. Once that is gone, I can once again clean the hardwood floor very well, put the rug down and get my new sofa/futon/chaise lounge finally put up and using it.

So, NO the political issues I speak of are usually tied into "medical things".... whether clinical trials, or laws, or trying to get the government to fund certain research projects, and so forth, my "own personal beliefs" in whom should be or not be President, and so on down the agenda, I feel I did my part, I can now bitch all I want, AND then go on with my life and pray we have NO ALLIES by the time one YEAR has gone by with the "Donald Duck"....



P.S. I WILL POST THAT PRESS RELEASE AS SOON AS MY NEWSPAPER PUTS IT OUT.

Some of Life's Little Disappointments - Especially When It Involves People, Promises and Illness

I've been on what some might call a "tear", "Rampage", "soap box", "griping session", or just plain bitchaaaching and griping over the past couple of weeks.

As this age, one would think by now, I would totally understand PEOPLE will let you down, disappoint you, make you feel less than, not as good as, or like you are some 3rd "rate romance", in some "motel rendezvous" - Touche' as some would say. A title to a song by Sammy Kershaw if my memory or what's left of it serves me correctly. Well, someone may have actually recorded it before him, but I do remember liking his version, especially with his voice singing it.

I am NOT "literally" speaking of any "incident" involving some 3rd rate romance or any kind of motel rende-anything... but the "feeling" you must have when you feel like you have some how it "bottom" of the pile of humanity. Those that seem to be sitting on top of you, and not even caring they are smashing your
"innards" onto the floor just beneath you.

I will say, taking totally up for ME, I've in all honesty, sick, not sick, felt like crap or not, kind of like "sickness and in health" have worked my butt off the past two years and honestly more, as a voice, advocate, volunteer, activist and Ambassador for the things I hold near and dear to my "stance" about humanity. I am definitely and maybe even a bit defiantly cut from a "different mold" than some. I would think that from the time I was about 4 years old, I totally became different than many kids, and later on, than many adults I have known or heard of. I have kind of "beat and whistled" my own horn and drum so to speak. I rarely go for the "normal" of anything. I've never felt being "normal" was anything but basically boring. And who in this day and age of almost being able to do anything... the SKY literally is the limit... would want to spend their life normally boring??? I did for years, OR I tried to "think" I was going with the general flow of those around me. Well, hell, I can attest that now I realize where I went, what I did, who or whom I met, saw, spoke to, and how I decided many years ago to live my life... was for many NOT considered anything but normal.


Sometimes I have to wonder if that is the reason I am "chronically ill".. as silly as that sounds, let me explain further. For those of us that are fortunate enough to have very little issues with our health, then you truly cannot possibly put "your feet in someone's shoes" that are chronically ill and/or in chronic pain. If you have been one of the people that rarely missed a day of school, went on to college, and the same happened, then you went out into the working world, got a job, and you just never miss work because of illness, surgery, and so forth. I have to wonder if that is even the "norm" now days. Maybe it is because I am a fully fledged "chronic illness" survivalist, that knows rarely a day that everything physically feels ALL RIGHT! It is usually one, two, three or more things happening to me physically, that effects my emotional and mental health also. If you awake to pain every morning of your life... you know without a shadow of a doubt (unless some miracle happened in the night) that you WILL awaken with some kind of ache, pain, or something that kind of makes your start of the day, a bit slower than many. For those like myself, that have to run to your desk (well almost more like crawl) take all of the "early morning" medication that you HOPE will give you a reprieve from pain, illness, or whatever maybe happening on any given morning of the week or weekend... so that is in itself is your 1st priority. Then you dive into go and turn on the coffee pot, and probably take a look at the MANY things on your list or lists that you either NEED to, HAVE to... get done... or more like what you can possibly PUT OFF until the next day or later in the day once your joints, bones, hips, shoulders, neck, feet, ankles, thumbs and probably the rest of you are kind of "lubricated", jump started like a small car battery, & then after the brain fog lifts... you maybe able to begin your day.

ADDING THIS FROM TODAY SINCE IT KIND OF GOES ALONG WITH THE ABOVE... NOVEMBER 9TH 2014...

AND HERE I GO AGAIN... STILL ON MY "SOAP BOX"....


As if I were not busy and stressed enough I decided to take the Defensive Driving Test again... just for the 10 percent off my insurance but all and any discounts help for sure. I am doing it all online which is great. But, damned I don't remember it being as long as it is now. It has been a long time I guess since I took it last. So, they have probably added more to it due to cell phones and all of the new technology in cars that can help and also hinder with distractions.... so now I am in the middle of that, along with waiting for Geico to answer a question before I change policies, and then I had paperwork to come in for another thing I am in that has to be done every 7 months, I have three appts next week, the dentist, blood work and my heart doctor, plus my last Arthritis Foundation Ambassador meeting for my year of training is Tuesday afternoon, so I find out it if I've done everything to be an Ambassador, plus possibly did the extra things in order to be a "Platinum Ambassador". I found out the article that I've sent to our newspaper goes in (either it went in yesterday and wouldn't you know I did not get my paper) or it goes in tomorrow. I had an email from the new editor of the paper. I had sent it in about 3 weeks ago, and heard nothing. So, I resent the email, and still did not hear anything. I went down there early last week with a copy of the email and the article. The woman told me then they were having a change of staff, thus the delay. Well, I got a very nice email from the new "editor" who told me he was going to make it a "Highlighted" Article in the "Life Style Page" with my photo on it and everything! So, it is in the works also... but through all of this, then have have a "week" reprieve from APPTS!!! - only to have ONE EVERY DAY OF THANKSGIVING WEEK!! I HAE TO HAVE my pain pump refilled 2 days before Thanksgiving, Mom and I see the PCP the Monday of that week, and then I have to go back to Dallas to see my Rheumatologist the day BEFORE Thanksgiving... when ahe the heck am I supposed to have any time for a holiday... sometime next year I guess!!! It is insanity, and that week will be nuts anyway, due to many being off the entire week, kids out of school, parents possibly taking a few extra days off... I hate to think about Dallas Traffic... especially during the week of a major holiday... nuts, they already can't drive on normal days, much less during holiday time... I dread it... MY problem is also I am not feeling very well at all... I thought a few days ago I might be either coming down with something, or had a flare coming, ... and I just have not had the energy I really need to get over all of these doc visits, taking care of the house, grocery shopping... speaking of... I went Friday for my "stock up" we are OUT OF everything grocery trip... and I knew it would be a load. I took in about 7 or 8 reusable bags knowing I would probably fill them full. Well, I got about 3/4 of the way through my list, and I was hurting so badly in my lower back, my right hip and lower back, and side began to just hurt like hell. My feet were hurting like they do in the mornings when I first get up, and I was just almost not able to push the basket around. I had to LEAVE off part of my list, get in line, check out, get them to carry the bags to the car, and go directly home. I was a total wreck, by the time I drove home, got 7 bags of groceries that I could barely lift into the house, and then had to put it all up... myself... Jim helped by helping me empty the bags and sort stuff out, but he can't bend over, reach up, get on a chair etc... so of course I still had to get everything put away, and was grateful I saved 46.00!!!!!! in coupons... but it took me a couple of hours to print some, cut all of them out and organize them, then get them and me to the store, and get them out and double check them as I bought items to make sure everything was correct and check out....then of course as I said above get them home, put up etc.... I have and continue to discover between the time it takes me to get ready, shower, hair, makeup, then to get everything prepared lists, coupons and so forth, put myself in the car, get to the store, and walk through a huge store then get everything home... it takes all of my SPOONS for the Day and then some... and IT SUCKS!!!!! It sucks to feel ill, it sucks to feel old, it sucks to look old, and it just all sucks right now.... I cannot seem to get myself organized enough anymore to keep me from taking 5 times as long as I used to before the illnesses....

When You are Fighting Chronic Illnesses, Chronic Pain, Doctors, Pharmacies, and Medicare Advantage Plans - you need lots of ammunition and tenacity...

I have wanted to be able to get to this subject for all of you over the past couple of days. Of course about the time I have a "clear slot of time" open, my email decided to blow a gasket on me. I had also not known about a follow up appointment Mom had to have her semi-annual "cardio-sonogram" yesterday. So, I had to pick her up and take her to have that done yesterday. It's not that it takes that long, but by the time you dress, pick her up, have the testing ran, then get back, visit for awhile, and I also had a couple of errands to run, I felt like my day was gone and I did not get anything I wanted to get done accomplished.
Plus, I had "overdone" it and used to too many of my "spoons" last Friday, so all of the plans I made to do things around the house both Saturday and Sunday, got basically chopped in half. Saturday I was in so much misery, between stiff, sore, pain, a splitting headache, almost as if I had another Lupus or RA flare hitting, that I spent Saturday on the sofa for the most part, and that really frigged up what my plans had been. I have SO MANY things I want to get accomplished around the house, from repainting my kitchen, painting and redoing our spare bedroom that is our "music room", getting the floors put down in the kitchen and bathroom, and laundry room, we still never got all of the outside of the house painted... and things just really took a nose dive when Jim had the car accident, was in the hospitals for so long, in rehab for so many weeks, thus lots got put off until we could get back into some kind of whatever normal was as far as a routine. Well, we have still to find that "normality" or routine. I feel like I fly by the seat of my pants most days... either waxing and waning one way, or flopping around like a fish out of water in another. Nothing ever seems to come easy, no matter how simple, you can guarantee there will be some kind of snag in the line.

But, when I got this ridiculous letter from Humana, My Medicare Advantage Plan. I have had them ever since I first got my Medicare parts A and B, which was about 2006 or so. They have now decided I guess to probably NOT Pay my PCP enough OR my PCP has gotten "greedy", thus he will no longer be a "preferred provider" come Jan 1, 2015!!!! Which totally sucks green pecans, if you know what I mean. This primary care physician of mine is the ONLY ONE who out of all of the tests, doctors, surgeries, and so forth I had had, the LUPUS, RA< SJOGREN"S, and the list continues. Well, Dr. "B" as I will refer to him as, had just gotten to my home town and I was one of his very 1st patients. At the time he was brand new, he was "brilliant" when it came to "discovering" the unusual, he looked at everything with a "fresh" eyes, and he was "up" on the latest when it came to autoimmune illnesses. But, even though I was one of his very first patients, including I got MANY others to move over to him, because I so so pleased. He got me on the right medications, and I did go and find try to find a Rheumatologist, in which I did. But, the Rheumatologist were more on the end for the Rheumatoid Arthritis end of the ball park, Dr. "B" took care of the Lupus. When I have flares, he is the one that gives me the Solu-Medrol injections, the larger 14 days step down doses of prednisone. He also prescribes my MTX, Plaquenil, and small daily dose of prednisone. So, without him I would be back and forth to some doctor in Dallas, that would be the waste of an entire day, more money, more time, for something that can be handled here, usually by a phone call, me coming in, getting an injection, a script and I am on my way.

I am not quite sure who is the issue, probably both... it is a well known fact Medicare and especially the Medicare Advantage Plans don't pay worth a darned when it comes to the physicians, But, if you have someone within 5 minutes of home that can do the exact same thing, you save time, the doctors save time, gas, and things run much more efficiently that a trip to somewhere else for a Lupus Flare.

So, this letter that I receive from Humana explains to me that if I have "certain" health conditions that Dr. B takes care of, then they will make an exception and pay him as they always have. So, out of about 15 health conditions names on this paper, Lupus was one of them. So, I fill in the paperwork, send it off to Humana, and about a week later, very late one evening someone from Humana leaving a message about that paperwork. She said she would call back the next day, and so I expected to get a phone call from them the next day. But instead about 3 days later I get this ridiculous letter, stating that "Lupus" and Hip Pain (I have NO CLUE where "hip pain" came in what so ever") did NOT qualify and they would NOT continue after Jan 1 to pay him as a "in network provider". OMG, I was so livid, had it not been late in the evening by the time I got the letter Humana would have gotten a piece of my mind...So, of course you can send in a written grievance in which I did. I also boldly told them they were not going to get by with blowing me off like that. My "condition" of Lupus was serious, it was something that Dr. B is the very doctor who diagnosed it, he is the one that since 2009 or 2010 had taken care of me, which every time he fills my medications, he does the follow up blood work, he takes care of the "side illnesses" that go along with the Lupus, and not one other PCP is going to want to take on my complicated case due to it is a complexity that has to be kept up with. As Dr, B always knows exactly what is going on. If I have a "new" symptom, he knows if it is related or not to the Lupus, and he also takes cares of my mouth ulcers, thrush, stomach problems from Lupus. As I had said and we know for a fact, I can go from "well" to ill enough for ICU within minutes under some circumstances... just like I had double pneumonia back in April. No one was here but myself, so I did not realize I was running such a high fever I was all but see things and hallucinating. Thank goodness I thought to check my temp and even though I never run fever, I did not usually do so, and if it had gotten any higher I may have went into convulsions. Luckily, I was still smart enough and scared enough not to drive alone, so I called my Mom and had her pick me up that Sunday afternoon and carry me to our Urgent care Center. But, if that had been any other time during the week, I would have called Dr. "B" quickly, and found out I was running 103.9 fever, and had double pneumonia!!!! It was so bad the doctor on call at the center wanted at first to send me to the ER and possibly have me admitted. Well, at the time Jim was in Baylor after the car accident, which he was still in Acute Care and had just gotten out of ICU with all kinds of broken bones, a very long 9 hour back surgery, 17 broken ribs and it continued on. The very last thing I needed was to be put in a hospital down here, and have him in the hospital up in Dallas....

So, having a physician that KNOWS my health issues, ALL of them, how the interrelate to one another, and what has taken place, from surgeries, to the 6 weeks I spent in two hospitals, and almost died from what they can surmise had something to do with the Lupus. But, even in the huge hospital in Dallas, and all of the highly specialized doctors there, many of them were NOT familiar with Lupus, nor any of the health problems that come along with it.

So, I got to thinking about this entire scene, and it just makes me even madder than I was when I first got the letter from Humana! In the first place, IF HUMANA was PAYING the doctors better, then the doctors WOULD NOT be dropping out of being "Preferred Providers"... and if the DOCTORS were NOT SO MONEY HUNGRY they would be "settling" FOR WHAT THE INSURANCE pays them, and not setting their GOALS OF MONETARY GAIN so high they cannot either afford to pay the doctors better OR WORSE they take FOREVER TO PAY THE DOCTORS!!! This is NO JOKE and it came directly from the mouth of one of my physicians!!!!

He had TWO SURGERIES, and I know he meant very EXPENSIVE SURGERIES, because it was probably something like having a pain pump internally put it or something like a stimulator put in internally, which the doctor has to implant. Both of them are very expensive. Just the devices themselves run upwards of 50,000.00 or so.

Anyway, he had two patients that AFTER TWO YEARS OF dragging their feet, the Doctor had to take Humana Medicare Advantage plan to COURT IN FRONT OF THE JUDGE, and the JUDGE MADE THEM PAY MY DOCTOR!!!

But, it took him 2 YEARS to get paid on those two surgeries!!! If he has to wait to get paid on many of those expensive procedures, they will all go broke trying to keep up an office, pay employees, pay taxes, and keep an office up and running. It was insane to hear how long he had to wait and then for a judge to have to demand they pay him what they owed him. I just about let my jaw hit the floor. Now, I also know doctors charge WAY TOO MUCH, to try and compensate for what they are trying to make up on those cases they do not get paid, or certainly not enough. So, it is a circle in circle around and around the merry-go trying to get one hand to a one to pay the other. In the mean time guess who suffers through this??? Yes, you have it.... US, the PATIENTS!!! We suffer added money out of our pockets, paying for doctors and the clinics and tests, and in the end, half the time no one has a straight answer for us anyway. So, now this puts myself, my Mom, and Lord knows how many other patients just like us are suffering through the exact same issues. It is damned if you DO, and you be damned if you don't.

I have even threatened NOT TO go to a PCP anymore, but just use our "urgent Care center" here. They have their heads on straighter than most of the primary care physician. The 3 or 4 times I've been out there, one of which was for a Lupus flare during a weekend, and then I could go there and get checked in, checked out, have my injections, get my prescription and be on my way. To top it off they are the ones as I said above that diagnosed me with double pneumonia, took the X-rays right there, right away, were on the ball and I was out the door and headed home without any hassle. And out of pocket for me was my $40.00, plus I did not get exposed to an entire room full of germs and people running fevers, and possibly get something else, other than what I already had. It was a "pleasant"(if you can call having double pneumonia pleasant" experience, just due to the fact there was no hassle, and I was home and on my sofa within an hour and a half. It took longer for the pharmacy to get my script ready than it did to get through the Urgent care in itself.

Now you can get your flu shots, pneumonia shots, even tetanus and so forth at the pharmacy, they will even sometimes check your cholesterol, blood pressure and so on, including hearing test for free at different times. It is getting to where people don't want to step into the room of a doctors office, because it takes too long, they never answer your questions, once you spend hours getting in, they then herd you in and out like a bunch of cattle, not really bothering to answer a question one you may have. I've gotten to where even my "tricK" of taking my LIST of all the thing I NEED to talk about them with, and he is running out the door before I can ask the 3rd question. As someone who believes in researching everything myself, and also believes that MY TIME, YOUR TIME, OUR TIME IS JUST AS IMPORTANT AS THAT DOCTORS TIME!!! So WHY do WE wait for HOURS FOR THEM!!!


Then they have the audacity to post a sign if a patient does NOT call in 24 hours ahead of time to cancel, they can charge you anyway. But, I've had doctors CALL ME ON MY WAY TO DALLAS FOR AN APPOINTMENT and they tell not to come, because the doctor is out in an emergency or had gotten called away suddenly!!! So, now my day had been half ruined getting ready, getting dressed, wasting, time, gas, and everything else, yet it seems to be perfectly "okay" for them to cancel at the last moment. Believe me I felt like sending them a bill for my time and see what they thought about that.

I had read an article a couple of years back where I woman did just that. She had a doctor cancel on her two times in a row or something, so she did send them a bill for her time and trouble!!!  Whether she ever got able paid or not, but I bet it did put it on their minds. OUR TIME is just as valuable as anyone else's is... whether the doctor, nurse, surgeon or the Pope!!!!

Again though it takes time and tenacity to do that I can see where under the right circumstances it would get the attention of those who think they are "better" than use.


I would be interested in knowing how many of you with Medicare Advantage Plan and possibly have gotten the exact same thing. A letter telling us that our doctors won't keep them on and be "preferred provider" after January1st 2015. If you HAVE either post here, or send me an email because I would love to hear from you. Then also what are you going to do under the circumstances? Change, try to keep your doctor, just pay the "extra" amount and stay, or does it even matter....

Random Acts of Kindness Day October 21 and also additions to my blog

For one, October 21st has been named "Random Acts of Kindness" Day.... and as I said on Facebook... I try my best to always thank people, tell them to have a blessed day, to give them the respect and appreciation they deserve. To stand there and have to check out people on some days, I know has to be almost torture... People tend to not be in such a great mood when their money is flying out the door with everything so expensive ... thus sometimes that person behind the cash register gets the brunt of others frustrations...

So, try to make someone's day and it can be anything, big or small....

Also I have been working on my blog now for a few weeks... I've changed some things around, added some stuff, put stuff in a different place and I have also added lots to pages... the one "About Me" I wrote quite a bit on today. So, as you go through my blog, be sure you check out the other pages... I've added some to the "News" page, and some to the Illness and Medications pages... and I will continue to advance and add more and more as the days go...

I really want to make my blog SHINE and people really want to come here, so I have to get it really going well, so people will want to read it.

I will be posting less and less on FB and more here as you have seen me do...

That way there will be a link on FB to the blog.... and you can come here to read all about the news, information, medications, and so forth that is happening to me...

Be Well, and may your week be wonderful in many ways... Rhia