Showing posts with label Arthritis.org. awareness. Show all posts
Showing posts with label Arthritis.org. awareness. Show all posts

Thursday, August 6, 2015

Trying something new - A "daily" Online "Paper" about Autoimmune Illnesses, Writing, Chronic Pain, Family, Coping, Surgeries & more

https://paper.li/ravishingrhia/1438808814#

Autoimmune Arthritic Systemic Life Daily – Rhia

 

A "Daily online Newspaper"  I am "Customizing"  for my own interests, advocacy, activism,Ambassadors, Illnesses, Family and Coping...


This is new for me.. not sure if I will keep it.. it depends upon time, and all in between. I don't want to begin yet another "tool" since I really need to put my efforts into finishing my 3rd book and my blog, advocacy etc. But I thought for the moment I might give this a try.

Tuesday, December 9, 2014

WEGO Health Awards Annual Event!!! Please go by and "Endorse" me!

Things have been hectic with everything going on from the holidays, to my own issues with going for check ups, getting my pain pump refilled, getting Jim to a decent, reputable pain doctor (MINE)... and hopefully getting him the medications he needs in order to be able to get up and function without so much horrid pain.


Jim's pain of course, like mine and many others is a complicated situation. After the car accident, he has lots of damage to nerves, to the spinal cord, to muscles, and so forth. So, it takes a combination of medications, not just the "standard" pain meds, to help him. Things like Baclofen, Zanaflex, Gabapentin, are three of the others he needs in order to get the pain of nerve damage, muscle issues like spasticity, under control. Then some regular pain medication for other pain. So, going to the specialist enabled him to get ALL of the meds needed, rather than just "pain meds".

I am still reeling also from the ridiculously stupid incident in Corsicana that I would NOT TAKE my dog to .... the so-called "Oral Surgeon", more like a money hungry greedy, jack ass, that practically ran out the back door, when he heard the lady in the front asking me for MONEY!!! It was "supposed" to be a "free consultation", or at the very least, NO other costs of Xrays. Oh hell no, of course he had to do his OWN freaking Xray, in which my dentist had just done not 3 weeks ago to show the HOLE between my sinus cavity (Maxillary Sinus Cavity) and my mouth. As I've said that was caused due to a very difficult root in an upper molar that was so close to the "boney part" between the mouth and sinus cavity that it actually pulled a hole in between them. It appears in my mouth to be only about like the thickness of a small toothpick. But in the X-ray, it does show a larger "communication" as they call it in technical terms, maybe a 1/2 inch or possibly longer between them. Well, I went down there prepared to set up a "more aggressive plan to fix it" which would entail probably bone implant. I have already had it "sewn" closed initially, then my own dentist did a less invasive procedure that I wished I would have asked for "gas" like I had been with the rest. He had to literally "cut" a flap of my gum and try and put it over the tiny hole, then suture that into place. Hopes were it would "seal" itself over and we would be done... but IT IS COMPLICATED RHIA!!! So "Rhia's Law" NOThING is "simple" with me... always has to be complicated as hell and stubborn, and cost more... and. and, and .... and ... and then more... but the jackass down there basically as far as I am concerned ripped me off of 130.00 and DID NOTHING for me... in fact he was even "wishy washy" ABOUT ME having it "fixed"!!!! How stupid is that, plus he wanted to do the "same thing" that had already been tried and failed... and charge me $2,400.00!!!!!!!... YES Two Thousand Four Hundred Dollars and was going to do it under a "local" and not even gas!!! He is nuts. I watched on U-Tube what "needs" to be done... and I NEED TO BE KNOCKED OUT to do it!!!! It is insanity now days to get anyone to do their damned job as far as physicians, pharmacists etc...

Yesterday, I went to 3 DIFFERENT PHARMACIES, to get Jim's meds filled... and used to if they did not have it, they could order and have it the next day... NOT ANY MORE.... now like WG's told me they only ORDER MEDICATIONS ON THE WEEKEND!!! Excuse me???? No wonder they never have anything in stock... that is crazy!!! Hell not all that long ago, I could go into my pharmacy in Corsicana, my Pharmacist, would GO OUT OF HIS WAY, AND even call around to other pharmacies if need be to get my meds if they did not have them at the moment!!! And this was not a "small" pharmacy, but it was actually Wal-Marts pharmacy in Corsicana!!! He was amazing.

RARELY DID THEY NOT HAVE MY MEDS... and if they did. 99% of the time, they got them that day, if not the next for sure......

Well, I finally had to just get up, get a few things done around the house, that I REALLY DID NOT feel like doing, but I did them anyway... and now I think I may sit down and watch a movie with my puppies....

I am seriously considering writing yet a 4th book. This one will be "fun" for myself and everyone who loves the "colloquialisms" of different states, even different places within a state... accents, the "sayings" we have heard from our child hoo years and so forth. My husband has been on me to actually put ALL that I have and say all the time together and publish a book of them. Thus, I've been putting down many, many of the sayings as I've went through the years. Now, I am trying to think of a really great name for the book!!!! Then I can "register" the title, start on the cover of it, and then it gives me something very "tangible" I can work with. Wish me luck as a venture on out yet into another realm of my life... many good times wrapped around lots of those "sayings" I've heard since I was a young child... this time I think Dad will be (would have been) proud... :):) It will be dedicated to him, because he is the one that filled my head full of them for so many years... :):) More to come..... 


Wednesday, November 12, 2014

Ennis Daily News Local Paper Arthritis Foundation and Myself - Article

After lots of jumping through hoops due to out local paper having new people coming in, I got the article about myself and the Arthritis Foundation in and published this past weekend. I didn't realize it was printed, because "Rhia's Law" if it will happen, it will happen to me... I didn't get my paper thrown that one day, out of ALL days, that one day I didn't get the paper as usual. That NEVER happens usually....


Anyway. I will thrilled to see it, and also thrilled to hear one friend of the family who told us about it this morning at the doctor's office, which is how I found out that it had been published!!!

I went straight to the paper and picked up a copy, and when I went into the market, I had several people stop me and say they had seen it in the paper over the weekend!!!!! Which made it even better!!!!!

I am kind of upset that they "shortened" it a bit, because it was longer. But, I think due to the fact he had left it out, and it had not been published when I first sent it to them, he made sure he got it in immediately.

Again, I owe so much to the Arthritis Foundation and especially to Laura Keivel, who has truly made me feel that I have found "my voice" in being an Ambassador for the Foundation. "The Lord Willing and the Creek Don't Rise" as the saying goes, I hope to be back in DC, for the Annual 2015 Summit on the Hill, in March again. If at all possible I plan to be there every year my body, my mind, my spirit, and everything involved allows me to...

Tuesday, November 4, 2014

Be there With Your "Jingle Bells On"!!!!!!

Be sure to Check out other locations around the nation for other cities that are having the "Jingle Bell Run".... this is Nationwide!!! I know San Antonio, Austin and I believe Houston will have one here in TX, and possibly more... but they are sponsored all around the Nation!!!!

Here is the link to find out where the closest is to you!!!

Tuesday, October 21, 2014

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....









Sunday, September 28, 2014

Talk About News to Make You Shout! You must read this and be sure to go to all of the links!!!!


I was so blown over by this announcement from the Lupus Research Foundation I had to rub my eyes, blink and look again to make sure I saw what I saw Correctly!!! This is such phenomenal news I was just taken aback.

And further not only do we owe the NIH hats off to this incredible research opportunity, but everyone below along with all of the researchers individually, those folks that are on board for activism, Ambassadorship, Volunteers... everyone who tries their very best to stand up and say that what we have now as far as help for these illnesses are simply NOT acceptable, as the Arthritis Foundation puts it. Hats off to all that have been and will go back to the "Hill" in D.C. to open up and tell their stories, or the stories of those loved ones hit by the horrific illnesses. People like myself that try their best to live a "normal" life when there is never any sense of "normal" when you have a chronic illness/pain and especially when it comes to an autoimmune type of illness. I am so thrilled to put this on my blog and share it with my readers!!!! Be sure you go to ALL of the links and see what is being said about this incredible Undertaking... the FIRST EVER of ITS KIND to do something to stomp Lupus and RA, along with many other AI Illnesses into the ground.... Again I am just totally almost speechless.

AMP Rheumatoid Arthritis and Lupus:

The partners

http://www.arthritis.org/
Government

  • NIH
Industry

  • AbbVie
  • Bristol-Myers Squibb
  • Merck
  • Pfizer
  • Sanofi
  • Takeda
Non-Profit Organizations

  • Arthritis Foundation
  • Foundation for the NIH
  • Lupus Foundation of America
  • Lupus Research Institute/Alliance for Lupus Research
  • Rheumatology Research Foundation


http://www.niams.nih.gov/News_and_Events/Press_Releases/2014/9_24.asp

 

 

 

http://www.rheumatology.org/ 

 

 

I will be posting more about this tomorrow and also more "Kudo's" to everyone participating om this historic event for RA and Lupus!!!

Thursday, September 18, 2014

Arthritis Internet Registery




http://www.arthritis.org/research/participate-in-research/arthritis-internet-registry/

I wanted to let everyone know about a special internet registry for arthritis of different types. Researchers will be using your information to effectively treat arthritis, or possibly even find a cure. For more information see the link above!

Sunday, September 14, 2014

Trying to find My Way Back - to What A "Normal" Autoimmune Diseased Life Should Be...


I began this as a post on Facebook early this morning, Sept. 2, 2014. Yet, after writing on it for about a half hour or more, getting up to check on the dog, and my head pounding... it dawned on me, "Get your other stuff caught up... i.e. make some sugar free jello, make the chocolate fudge cake for the weekend, getting the "stuffed peppers" I bought the stuff to make on the day when it was supposed to be cooling down; thus this morning seemed to be the best morning. I had thought about going out to wash my car. I thought if I did maybe rather than continue to "test" and tease us, it would actually rain. Well, so far I was wrong, as it all has done lately. It seems the weather has made many of us hurt terribly. Physicians (some physicians) want to tell us we are full of bull when we say that the "weather" doesn't effect our lives as far as our pain, joints, headaches, and so forth. I know beyond a doubt that from the barometric pressure, to "cool fronts', the humidity, rain, sleet, snow, thunderstorms, you name it, many will more definitely have an effect on chronic pain illnesses, joint issues, and many of the "2nd, 3rd, 4th, 5th and so on, disease that follow right along with the primary diagnosis. I had been concerned lately over "Shingles". I have seen way too many of my online friends, as well as close kin folks and friend that have had a breakout of shingles. I found articles stating people that have never had them, have well over 2 to 1 (50%) chance of having shingles if you have an autoimmune illness. I've been concerned over my illnesses because I feel I can't quite find a place of "remission" in any of them. I am on the medications, I am trying to do everything I can correctly, rest, eat well (ah, that one is hard with the teeth issues I have)           This next paragraph or paragraphs if you would like to say below are what I began on Facebook. I copied what I had already typed on and then decided I am going to "stick" to my word. I am going to post the bulk of the post here, then just put a small snippet in FB, with a link back to it here in my Blog. Blogger has made some changes, some good, giving you more options and other than just add chaos & confusion. I was hoping FM would slow down a bit and give people time to catch up. Sure many of us are "hooked" on line 24/7/365. But, all too often we don't have time to sit around and figure out the "new" things on FB, Blogger, and the numerous other sites we "belong" to. It reminds me of all of the stores I frequent here in my home town. About the time you learn how to use your markets check out debit system,  they bring in one that is "better, bigger, more secure" and also confuses the hell out of me. Then you run over to your pharmacy, same thing, now they handle the entire way you check out totally different. Now try to go shopping two or three department stores! Everyone one of them, either has a new "card" for you to sign up and and get 20% discount. Yes, the first time, and then after that, all you get an email box full of junk from them daily. Then they have all of these mark-downs with an "extra 20% off" at the register, and you either have your calculator out, they might be nice and have a "chart" up on the rack telling you what the cost will be after the "extra" is taken off at the register. Anyway, when you are already dealing in trying to keep your sanity with a brain fog that seems to only be getting worse each week; the lists that have now become the lists of lists you need to take care of and LORD forbid I not forget something for someone, a doctors appointment, or even something as trivial as getting "change for the coke machine, or picking up a drink, some kind of soda that if I don't, no one else would think about how thirsty I get when I am having to drive anywhere, and in fact I cannot walk through a huge store like a Wally World's, unless I stop by a front counter and pick up a drink to sip on while I shop.                                                                                                                 

I've been telling this now for awhile to my family and friends. Not only had my physical  issues change, I seem to have slowed down to a crawl at times. My brain cannot function, I feel it takes me forever to get ready, then I look down and there is always something else that needed to be done, or I forgot to put on "the list" .... heck even times I do well to remember the name of a room, or the name of what is in that room! Store names, my own phone number, it seems that may "brain fog" add          


I thought I would post this on FB at first, then changed my mind. I is a combination of several days posts, I began days ago. I changed my mind and want to put it here first, then really tell about these feelings I have on my blog; then share them that way. I will put this on my blog, but it has been on my mind now since I went to Winstar last weekend with my Mom. As most of you know, due to all of my extensive sharing, I LOST ALL of my Teeth to Sjögren's within a year. It sounds almost impossible, and I know from everything I've read and been told, that they "damage" that could not been seen probably had been going on since I was first diagnosed with Lupus, Sjögren's, Raynauds, RA... and who knows what else. That was back in about 2009-10 when the very first real "blood work" was done, and the doctor took ALL of my years of symptoms seriously to put them together. When he did, I was sent immediately to a Rheumatologist. This gentleman, a Rheumatologist no doubt for many, many years, still even used "gold injections" on occasion on patients. But, he was far from a dummy, and further he end  around the corner there in his office to have blood drawn, urine and he did even a more extensive workup on me. But even that first day, just by an examination of my toes, fingers, wrists, thumbs, feet... he "felt" and the saw the damage. He also saw that I had Raynaud's immediately, and I had an "hyper-extension of many of my joints, almost like being double jointed. Even after that first visit, I was so upset that it had probably been going on for years and years.. my Xrays showed my toes and finger joints being bad already, so none of this happened over night, and not one doctor until my new PCP at the time, could ever put ALL of my symptoms together. It was somewhat almost a relief, yet it also very scary also, No telling what had really come of "damage" not detected since it might have been years this was going on, yet no one could explain the severe migraines, the extreme tiredness, the not being able to "multi-task" as I once could, having just about every joint either already been injected or had surgery or even been totally replaced before the age of 50! No one could truly explain how someone, like myself, a very fit woman, (walked, ate properly, exercised daily, kept my weight down, and yet I had a heart attack at 40 years old and another at 50! Nothing made sense, yet no doctor could put it all together either.. what made my new PCP at the time think "autoimmune issues" I don't know... Maybe a conversation I had with him about me thinking I had "Lupus". Anyway something finally "clicked"... thus here I am today, far into the realms of autoimmune illnesses... and the latest issues the Sjögren's... so here I am now 54 (since Feb 15th) ! battling a battle I thought I would never have... losing my teeth and having dentures... and won't hold until the "mini implants can go in, which will be another 60 days or more. I am not going to lie They are a pain in the butt, or mouth I guess. They seem odd, too much "junk" in your mouth, a pain to have to clean, then put in each morning, then have to brush them, clean my mouth and put them in, then out they come at night... you cannot sleep in them. And eating in them for now is almost impossible. Even my "bite" pattern is completely different, which I am thrilled about, because they are "pretty and I wanted pretty teeth all my life, just never realized they would have to be "fake" and not my real ones. But, I honestly felt like once I got these new teeth in they would "fill in" where I had lost many teeth, which in turn would fill out my lips more, my bottom cheeks and lines around my mouth. I was hoping to "see" a bit different maybe even more youthful (by a few years) me.... but guess what? Nope.... did not make that change nearly as much as that as I had so hoped it would. I just was so disappointed, because I did not realize with the scars from the accident years ago, and the two small scars from my fall right around my mouth. I keep thinking, well, like any other woman, there has to be a way to "tighten" up that skin, or "bleach" out those darkened scars. I even went so far as to  begin looking today and am going to research some of these new facial creams out on the market to see which ones really work, and which ones charge a fortune, yet do nothing. I come more and more to realize I must take even better care of my skin. I have always pretty well used the proper things on my face and skin, lotions, I always take my makeup off at night, allow my skin to breathe and so forth. But, I pray quitting smoking will also reduce some of those lines around mouth. I see elderly women who probably smoked all their lives, and they have all of these deep seeded wrinkles around their mouth, and I always said I never wanted to do look that. But, dammit, when the teeth are out, I somewhat do and it upsets and embarrasses me to have anyone see what it truly looks like. I know we all age, some of us more gracefully than others... and depending on how well we have taken care of our bodies, minds and spirits makes a huge difference in the way you look as you age.

So does having these illnesses like Lupus, RA, Sjogren's age us faster? In all ways, in some ways.... what do you think????? I want to know how you feel about the subject and how many of you really take great care of the hair, skin, nails, including your face? If so, how and do you feel it is making a difference??

             

Thursday, September 4, 2014

Catching Up!!!!

There is a great deal for me to "catch up" on as far as the blog. Many of you also read Facebook, and I had posted a bit there, but I want to try and post here, then put a link to it on FB all the time.

I finally have my teeth completely gone, and a set of beautiful teeth, like I have wanted since I was 15 years old! They are "fake", BUT hey they are beautiful. So, always as they say, watch what you ask for. :)

I will be about 90 days out before the "mini implants" go in and the dentures are modified to go on those. Thus instead of the bottom one especially wanting to come out, they will stay in place, not rub sores on my mouth etc. Don't get me wrong I love them like this! I can finally smile!

Jim is slowly improving. We are having all kinds of heck getting him a couple of the doctors he needs that will take the "insurance" he is on. As far as the "wreck" it is in "litigation" I guess, well heading that way, with both of us giving depositions a couple of weeks from now... and then it is just depending on the other parties involved how long before any type of decision is brought to us... So, we shall wait and see... I DO KNOW that a couple of the parties involved have NOT cooperated AT ALL! To not one certified letter, to no visits, to nothing, and I am not sure they have even said they will come to their deposition times. So, again just a waiting game.

I have been so thrilled with all of the things going on in Arthritis.org! I have been taking all of the classes to be an "Ambassador", and the last one is next month! That is when we are told we are "accepted" or not, and also if there is anyone who qualified for the "Platinum Ambassador" title. So, between emailing my Congressmen, going to a Town Hall meeting yesterday in fact, and so many things I have done to help the cause.... and made some incredible "friends" and met some awesome people along the way.

 I have a couple of other projects I am working on, trying to clear my schedule, so I can get back to what I know and love, besides advocacy... my blog and writing.

I will definitely try and get back tomorrow, post more, and give you more information... we have an exciting election coming up and much of this that is involved is for "We" the people, thus we need "The  People" to get up, go down to where you cast a ballot and VOTE! Griping about it, making small or large talk about it won't fix it... it has to be YOU AND I... all of us getting Congress, Senate, House and the President and Chief of Staff, along with ALL of those that are in politics and are supposed to be representing us! So, get ready, because that is going to be my mantra for the rest of the next coming months!!! GET UP, GET to the VOTING place, CAST YOUR BALLOT - called  VOTING! Believe me even though we may not think so, OUR VOTES DO MATTER!! WHETHER ONE OR MANY, THEY DO COUNT!!!


Monday, August 4, 2014

"See NEWS" Page for the New Post! Exciting News for All Wanting to Speak To Your Congress Members!





BE SURE TO SEE THE LATEST IN NEWS TODAY!!! I JUST POSTED UNDER "NEWS" ABOUT THE UPCOMING CONGRESSIONAL BREAK... SO THEY MAY BE AVAILABLE TO YOU  - WE MUST SPEAK OUT TO GET THINGS DONE... RHIA

Tuesday, July 22, 2014

3rd Time A Charm!! -

 It is still not exactly as I want it BUT you can now "comment" right from the front page, where it is "no comments" just click there and a new window where you can comment will open up. Comment there and any other comments will also be in that window. I may still go back to having them right under the post. I feel people are more inclined to "leave a comment", and read any that are there.

 

I am hoping this does help clear some of the mess up. Google really did a number on Blogger when they made the "Circles" and the Google plus 1, etc. Not that they are a bad thing, but it did for some of us cause a nightmare with our blogs. 


I am also seeing a "drop" in people coming in. I realize that is my own fault, with everyone as crazy as it had been. For about 6 weeks, about 4 days of each one has been spent either at therapy, at a doctors office, at the dentist, or something to do with one of us and medical mess. I am hoping that is beginning to calm down a bit. Jim "completes" out of the home therapy tomorrow... so that takes care of 2 trips each week to Waxahachie. It seems like not that much, but it just wrecks the afternoon and evening. By the time you get out, get out of the traffic and get home to straighten out dogs, house, and put things away, it is a hurried dinner of whatever and then all we want to do is sit down and freaking relax. I see my Rheumy next week! Thank Goodness... and I will post at the bottom of this a link to my FB page where I put one pic up of my new beautiful teeth! ;) I will get some when I am dressed and have makeup on next week. But for now my mouth is still swollen, so my face in places is a bit puffy especially my top lip and around my nose.... More very SOON, I promise... I have LOTS of exciting new stuff... some I can tell... others, well it will be awhile, but I still have eons of stuff to catch you up on.... Hugs, Rhia



I FINALLY figured out what the issue was on the "comments" part of my blog. That is where you can put your comments right under my posts. It is ready to go now :) Let me know if you have any problems!


Rhia

I am still having problems on the "main page", but if you go to the "page" of that particular post, then you will see where you can "comment"/. click that and a window will pop open where you can post comments. I know blogger is making a bunch of changes, which has screwed up a lot of what I thought was working. That is why I have thought about going to Word Press. But, then that means a learning curve to figure out Word Press also.... always something...  If this is still not making sense, send me an email at rhia@ravishingrhia.com or redstangblonde@yahoo.com and I will explain fuller.... I want you all to be able to comment! That is my reason for this in part, is so I can HEAR FROM all of YOU!

Sunday, March 30, 2014

Want to Update everyone here.... things are not very well right now

I am going to just "post" a few of my Facebook posts so everyone will know WHY I have not said much here about the Arthritis Summit....

I will say it was AWESOME! I would go back again in a heart beat! it was one of the best experiences of my life. When I get some pictures out of the camera etc. I will definitely tell you more about all of it.


But, just about the time the Summit finished up, my family suffered HORRIBLE, almost NIGHTMARE NEWS!!! My husband Jim, has only a "Step-Mom" other than me in his family. He had not seen her in over 12 years and I had not met her even though we have been married almost 10 years. So, Jim is originally from Washington DC. This was a perfect time for him to meet me after the Summit on Wednesday, we could stay with his Mom, and get to visit with her. And he could show me the "rest" of DC!!! Well, she was coming to pick me up, His plane was not due in until after 5:00pm due to me thinking we may not get back from the House of Representatives until 5pm or so from the schedule. But, we were back by noon. So, she was going to pick up me, and take me to her home, and he was going to come into Falls Church via the Train or whatever... anyway he would be very close once he got his luggage & came to that station. Well, she misunderstood and went to the "other" Hilton in DC, thinking I was there, rather than at the Capitol Hilton. So, she was late. I was outside enjoying the sun, since the day before we were in sleet and HUGE snow flakes, and COLD all day long. The wind was still cold, but the sun kind of warmed it up a bit. Anyway, due to the buses, etc. my cell phone was ringing, but I could not hear or feel it. I happened to go back in and see if I had missed her somehow and then I saw my daughter had called like 7 times!!! I knew SOMETHING was very wrong....So, I find out that my husband Jim, while on his way in Dallas to the airport to come to DC, was in an extremely bad car accident. As best as we know at the moment, an 18 wheeler rear ended him, and then shoved him up under a car or truck in front of him. We also were told the car may have spun him into other traffic. Needless to say, he is in one heck of a mess. Just about every RIB on BOTH sides are broken. They did massive 8 LEVEL back surgery Thursday that took 7 hours... from C-7 DOWN to T-7.... He has a "shattered" shoulder, a broken leg, a tiny "tear" on the outside of his main Aorta, a mild concussion, and he cannot "feel" himself move his legs right now. They first stablized his spine, then are going onto work on other things. I have some updates on my Facebook page. and I will just put a link to it here... that way if you want to know changes, and how he is doing you can....

I am also in not great shape. I fell that early morning he had the accident and cut through my bottom lip, bruised the heck out of my chin, skinned up both artificial knees ... I am barely able to walk, I am SO SORE from all of it and my hips are just hurting so badly... I DO have a Rituxan infusion FINALLY  SCHEDULED for Wednesday... but I have an appointment with the dentist. I have cracked off several teeth due to this Sjogren's and I have one that really needs to be pulled... it is hurting badly... I also think I maybe coming down with bronchitis... so I may have to make a trip to the urgent care center today, so it does not mess me up worse with everything. I cannot help him, if I am sick... thus I have to try and get the care I need also.

Here is the "Facebook" URL:

https://www.facebook.com/ifaarhia 


I am updating that page above so everyone can know what is going on. I realized it is just easier to do all of it in one spot and that way everyone knows the same information.... I appreciate everything that so far you are all saying... and wishing for us... Please keep Jim and I, and my family, his Mom and so forth in your thoughts and prayers. This is a very BAD situation, and sounds like as I hope IF things ar as they say, someone, (not m husband) was very in the wrong... but as you will read, I cannot even get the police report for another about 7 days or so... see the page above for updates and as soon as I have things from the Arthritis Summit I will post them :):) What an incredible experience! I am definitely going through to become an Ambassador.. and all they did to help me get back to Texas after Jim was hurt so badly was just totally amazing... along with another gentleman that helped me so much. He got hold of the proper people, helped me get on the plane, and back to Dallas very quickly... I will never be able to thank Chris Nieto and Laura Keival (Arthritis Foundation)..... along with Serena, Kerri, Pam .... everyone was totally amazing!!!!!

Monday, March 17, 2014

Asking for YOUR Thoughts and Prayers for This is SUCH A Critical Week-May I be Well Enough to be in DC to tell my Senators and Representative my Story

This is not just for myself, but it is for ALL OF US WITH THESE AUTOIMMUNE ARTHRITIC ILLNESSES AND OTHER CHRONIC AUTOIMMUNE ILLNESSES AND CHRONIC PAIN, FM, AND SO MY MORE... SO PLEASE KEEP ME AND LIFT ME UP IF YOU WILL!



Well Folks this is my LAST WEEK to be PREPARED to go to Washington DC NEXT MONDAY!!! Please keep me in your thoughts and prayers this week. In one week, I am supposed to be boarding a plane to fly to Washington DC to be in front of my Senators and Representative and tell them "my story" about my illnesses and how they have dramatically effected my life.... I have been so ill, it has been touch and go for me, we don't know if I will be well enough to go, and a few "kinks" worked out of being gone so long (my husband is supposed to fly in on Wed. when I am through and we are supposed to go see his Step-Mom that he had not seen in over 11 years and I have never met her)... so this week is my last week for everything to "fall" into place, and for me to be able to get on that plane... and be well enough, and everything 'worked" out so I can go... this is a critical point for ALL of us! This is sponsored by the Arthritis Foundation! So all I get to say and do effects ALL of us... with chronic illnesses... please say prayers that as I said I am well enough all here at home is worked out where I can get on that plane next Monday morningI appreciate all of the kindness, prayers, love and support I have received from all of you, and everyone in the other groups, that have been there to pray for me about my health, and all that life has sometimes pitched at me! You are all there to CHEER me on, when things go well, and there to support me when things are on the rocky cliffs of all of these autoimmune illnesses and the way that they have "altered" my life in so many ways, keeping me from being and doing all the things I want to do in life... I know this is one bunch of incredible people that are here for me!!!! Again this is SO CRITICAL and a dream of mine to be able to tell those on Capitol Hill how not just myself but ALL of us suffering from the pain, the horrible things we go through, how our quality of life is non-existent, thus me being there is like me standing i front of the White house for ALL of US!!! Please say an extra prayer this week, for I so need all of the extra support I can get.... Hugs to all.. Rhia 

This will help you understand why this is so important, please take a moment to go to this link and see what I will be doing there in D.C. at this time next week!







Thursday, March 6, 2014

PART 2 - Do Your "trust" your Own "instincts" Over some of the Medical Professionals (AutoImmune Illnesses or Not)

since this story was "ongoing" until even right at this moment, I've decided to bring the "rest" of it to you in a 2nd part)

Thus... this is a continuation of my prior post....  (PART 2!) -



Do Your "trust" your Own "instincts" Over some of the Medical Professionals (AutoImmune Illnesses or Not)...


Being Caught in an Upheaval Between An Insurance Company, A Physician's Office, My Own Autoimmune "Flaring" Body, A Pharmacy, and What to Trust? Myself, My Doctor... Any of us... we are all susceptible to "Medical Mistakes"... And How do We Avoid those? Or Can We?...


First of all I want to bring something to your attention, that my own Pain Physician brought to mine last Thursday. I felt after I had written the 1st part of this, surely that "ongoing saga" would end. Well, folks, I was mistaken, and here is the "rest of the story"....

I am not sure how much you have paid attention, but when was the last time on any "piece of medical documentation" (i.e. especially insurance and so forth) have you actually seen a doctor or physician called a "doctor or physician"? No sir, probably not in a long time. Now, the term "provider" has taken over the entire realm of medical professionals, our "Primary Care Providers"? What the hell is that? I consider "PCP" to mean Primary Care Physician. It was well pointed out to me, that in the 1970's, the terms like doctor, physician, nurse, and all of the "correct" titles of our medical specialists out there suddenly disappeared. Almost as if "David Copperfield" had came in and took them out of the language. Anyone can be a "service provider". Your plumber is a provider of service. The guy that takes your groceries out to your car, also is a "service provider". What about the mechanic that works on your car, "service provider". Well, she or he, DID provider YOU with a SERVICE! But, did they provide you with a medical item? Did they check you for an infection, take your blood pressure, write down all of your health concerns, and then turn those over to the next professional, your physician, that certainly should know more about your health and body, than the tires on your car. Good question. Same way with us. If you start looking at insurance paperwork, bills, anything medical, you will begin to notice, you are no longer a "patient". You are no longer someone who is ill, and is in need of a doctor. You are a "client", or some other manner of terminology that takes the "medical" portion out of it. Now why would this happen? Well, as my Pain Physician explained it, it was mainly due to "Medicare" and of course then the insurance companies that knew if they "took out" specific terminology for people such as physicians, nurses, patients, and so on... and put in generic terms such as "provider" or "client", then alas they can "charge a different price for things". They can take what should be just what it is, a physician's officer, and turn it into a "business", with a board of directors, and do you think those people sitting on that board of directors cares about all of their "doctors, nurses, medical professionals, and the patients?" Well, more than likely they are thinking about the "stock holders", or the "political power", or the "loop holes" that can NOW be created, because this is not a medical doctors professional office. It is a business, for clients. 
I found a very interesting article about this. After my Pain doctor and I had a very long conversation about how Medicare, Insurance, and the entire realm of our Medical Professionals, doctors, nurses, labs, hospitals, clinics... are going straight down the tubes, while those "fat cats" sit up on Capitol Hill, laughing in our faces, and could care less if I have a Lupus and RA flare! So what? BUT, if I could for ONE DAY deliver HE or SHE with the severity of pain, stiffness, fatigue, the LACK of any quality of life, could not go to a meeting or to work, could not clean the house, or go shopping. If THEY could have each and every symptom many of us go through in just 24 HOURS, I wonder where they would be looking, crying, begging, and doing everything in their own power to have a physician DO SOMETHING. Plus they had to fight the pharmacy, the insurance company, the doctor due to his fear of giving medication due to all the red tape, how long do you think it would take to make some HUGE CHANGES on Capitol Hill, and in our Doctors offices, pharmacies, insurance companies, and I would bet that those "lobbyists" that make those big bucks for supporting charging 2,000.00 for a 5.00 bottle of medication or more... all of that would be put to "bed" quicker that any one of us could shake a stick at. 
Boy, talk about having the "wool pulled over many of our eyes"! Let's face it, those of us "fighting" tooth and nail, almost dripping blood just trying to get SOMEONE, ANYONE to help are NOT stupid people. But, we have become so disenguaged, disenchanted, tired of the battle, lost hope in the true meaning of what this nation is SUPPOSED to stand for... become those that are giving up, because we do not feel we can win against Congress. Whether it is state, local, Federal... and all in between those with MONEY DO... and those with OUT MONEY do WITHOUT!
Here is the article link and if you do a search you also will be able to find information on this and why it took place:


I release this gentleman goes on to talk about "Concierge" type of Medical Care. In many ways, it would make total sense. For us that do NOT have insurance. For those of us who must pay cash. These physicians in many ways would make "more money" by charging the patients on a "cash basis" than what the EVER see from an insurance company! 
I don't know about you, but when my "Explanation of Benefits" comes in from Humana, and in the first place a doctor has charged $450.00, for a 3 minute consultation, right there you know things are screwed up.  But, take a look at what the insurance "really" paid that physician? He charges $450.00. The "insurance" gives a "negotiated" discount of $395.00. Let's say my "co-pay"was $40.00. Well, let's see. The insurance paid him a total of $15.00! In the first place, I PAID MORE in a "co-pay" than the INSURANCE DID on the actual bill. And guess what? My insurance paid a surmountable $15.00 for that visit. 

Now I am not sure about you, but something sounds too fishy in the fish tank on that one. What about these bills (and my husband STILL argues it is NOT true, but it is)... you go into the hospital for a "routine outpatient surgery". The outpatient portion of the hospital bill goes to the insurance company for this and it is $15,000.00. Your co-pay is $200.00, of which they quickly make sure you pay BEFORE THE SURGERY! You get the "EOB" in a few weeks. Okay there is the charge for $15,000.00. You paid your $200.00 co-pay. The "insurance plan" negotiated with that outpatient clinic that they would pay $300.00 on that procedure. So, they got "billed" $15,000.00! They were told the patient owed $200.00, which you paid. And the insurance paid an entire amount of $300.00! So that means that bill in total was paid "correctly" at a total of the $500.00. What about the other $14,500.00? Well, that outpatient clinic has to "write off" that, because they were told that on the one procedure, it should only cost an average of $500.00. Thus the rest they "eat", basically! Now before you think WHAT??? No wonder they can't stay in business! NO ONE STOPPED to think that the procedure you had may NOT have cost no where near $15,000.00! Let's say on the average it costs $550.00 for that same thing to be done over the nation. SO, who charged whom TOO MUCH, and WHOM paid whom too little or too much? I worked in a hospital business office for 6 years, which was about 5 too many, as a patient "counselor". In other words, I was the one trying to get them to pay their bills. Well, I also did a great deal more than just that. I "refiled" claims, helped them get the insurance to pay, and so on. NOT any more! Boy, "if" they file it, you are lucky. And to get them to "refile" a claim, is nearly impossible! Plus, if I had TALKED to any of my patients the same way I have been spoken to by those in the medical business offices these days, I would have lost my job the first week I was there! I cannot begin to tell you that I've been called everything from an idiot, to a moron, to told I was stupid and should just pay the bill! And that was the "nice" people! Yes, but it was NOT so nice, the times I am correct. When I FINALLY get to the RIGHT person, and I AM CORRECT, they filed WRONG, and then called me an idiot when they told me my Mom owed over $500.00 for a surgery, that she only paid $200.00 for the MORNING of her surgery, I can tell you that ALL of the women in that "office" are NO LONGER employed there. It literally took me 6 months, over that really, hours and hours of phone calls to them, to the insurance company, and visits when I was basically told to get out of the office.... and THEN A LETTER TO THE PHYSICIAN! Guess what! Within 3 days, there was an extremely NICE gentleman that was HEAD over that outpatient facility, that begged, sweetly, and apologized 20 times for "their horrible mistakes". And how he told me that he "thanked me", because they had also BILLED OTHER PATIENTS, for MONEY THEY DID NOT OWE! MMMMM... wonder how many elderly people paid those bills... and no telling how much... and then hopefully got a refund! 
If you cannot get anywhere, I can tell you a letter to the proper physician, usually works quite quickly. Especially when he is a portion of the Board of Directors, of the medical facility! But, more than once, even over a huge issue from when I was so ill in 2010, and spend way over 6 weeks in two hospitals. Again after months of fighting, I wrote my doctor a very explain and thorough letter, and within about 5 days, the entire situation was a mute point!

Alas comes to the NOW what I shall call the 2nd portion of a "Rhia's Week from Hell" with doctors, medical facilities, pharmacies, and the like.

I did the "stool samples" for the "PA" Monday, a week ago tomorrow. They were taken in, and I found out easily that they could have been processed within a couple of hours, no problem at the hospital. But, no the nurse from hades told my husband it would be 3 DAYS! Well, as he had told her, I would be dead by then. As he tried to explain again for the 10th time, We WERE very concerned about this HORRIBLE, unstoppable diarrhea I had. Again, not a budge... just another comment about "take her to the ER" if you don't like what we have to say! 

So, three days went by, and at that time, I was NOT well yet at all. In fact the flares were worse, I was  even more weak and fatigued, and all I knew to do was NOT take those antibiotics for sure, keep hydrated as much as possible, rest, and try and keep something bland in my stomach. Then I found the natural probiotic (IF we could find it in this small town) MIGHT help. I had read several people giving it rave reviews. Thus since I was NOT going to the ER, unless I got much worse, or if something else happened, we did what we could do ourselves. Well, it took about honestly 9 days, I believe, but first back to the days for the "test" results. No phone call, no email (they usually email me labs etc), nothing. SO, Friday, I called. This is truly the answer I got. I asked if the results were in. The girl on the phone said, well yes, they are. Then she said well, I will print them and lay them on the "PA's" desk. Well, I knew then there was NO WAY that chicken woman, nor her nurse would call me back. And so I was correct. About 7 hours later, I get a call from a VERY new. very young nurse there, and she said. Well, the PA said there was no bacteria in the lab work. And THAT WAS IT! NOT anything like, well how is she doing? Did she get any better? What about the Flares? NOT ONE DAMNED WORD!...NADA... ALL I heard was no bacteria, and click... that was it! Which, I already expected! But, the audacity of a "professional" that is supposed to be a PA, to my doctor who has been seeing me now since 2008, and HE is the ONE that usually IS EXTREMELY CAUTIOUS when it comes to me! In fact the "last time" I saw him, I had bronchitis. That was about 3 months ago or less. He told me then, YOU are very complex. You can go from a mild cause of bronchitis, to being in ICU on a ventilator within hours! I ALWAYS take special efforts to insure you get exactly the care you need due to the autoimmune issues you have. NOW, from that to his "PA" basically telling me to kiss her butt... within less than 3 months time! Wonder if they have PROBLEMS THERE????

*********** NOW. there is MORE to the STORY!!!!!!

After a very long drawn out affair in getting the PAIN PUMP FINALLY refilled on MONDAY, that also took forever, even my pain doctor just has this "odd" attitude. He seemed to be almost more cordial to my husband (and he is a new patient) than me, who has been seeing him since 2008. I NEVER did get quite over to him about the severity of the pain I am going through, and I am STILL going through yet this morning... 

This is NOW Thursday at almost NOON on March 6th! I am in still SO MUCH excruciating pain, I could just fall off the Earth right now and be happy.... for at least I would NOT feel so CRAPPY anymore! 

And again the ongoing "Rhia's Murphy's Law" continues. Rather than have 3 "things", mine are like at 53 things and climbing each day. Again, as I've said over the past 14 days or so, this has turned into total insanity.

AS I just said, today is Thursday. On Tuesday, my Mom had an appointment with the jackass doctors office, but just for labs. She was also told that he would not be in the office until after the 25th of March. So, they moved her appointment to then. Well, she went in Tuesday for the labs, and you know how she is, she is VERY nosy. :) Well, after asking about so many "new faces" and she is right, everyone that used to be there is just about gone. The past year each time you go in either everyone in the front office is different or the nurses are different... it is just nuts. Well, first of all she found out the majority of the employees that are there now, have been there LESS than 9 months. That right there tells me something is very wrong.

She finally asked where "Dr. Blair" was? Mom told them about the conversation of him being out until the 25th of March and due to that her appointment was changed to that day, rather than next week and so forth. Mom said she could see them all "huddling" in the hallway down from the main front door of the office. I am sure probably decided what Mom would either ask next or how to handle it. She found one of the nurses that have been there for awhile, and the one thing is that our Dr. Blair, with a wife and THREE stair step kids, like 5, 3 and less than 2 or so... are "splitting the sheets" so they say. Undoubtably his wife is divorcing him. Well, does not surprise me, because first of all he is NEVER at home... never... plus the "nurse" he had for a very long time, all of a sudden quietly "disappeared" about 7 months ago... and she was beside him for everything! Where he went, Nursing home, hospital, weekends, nights, whatever, she was with him. I kind of got the impression that their "time" together may have not been "all" work... but I don't know that at all. That is just something I observed even 3 or more years ago.

Anyway, it gets better. About 2:45 in the afternoon my phone rings, and it is the doctor's office. They said "Ms. St...." and I said yes, you mean my Mom? They said no, you. I said oh, well okay, you have me. What's up? NOW (funny how "lab" work changes suddenly)... this nurse is saying that the SAME PA that told me there was NOTHING in the lab stool samples on Friday last week, all of a sudden DOES CONTAIN a BACTERIAL TYPE YEAST - kind of like Thrush! I almost dropped the few teeth I do have in my mouth out on the floor! My question was " What did you say?" Again she repeats the PA's, name and said she needed to let me know they called in a script for me, because I do show a "bacterial type yeast issue" in the samples from last!

Well, I was in such shock, dismay, mad, angry, pissed, ready to slap the wall, kick my trash can, call them liars.... and of course,  I said , well, okay. She tells me to "stop" a med I usually take for one day, take this pill, then I can go back to my regular meds. Now how the hell a stool sample, collected a week ago yesterday, that shows the results arrived back at the doctors office I think late Thursday night, and Friday seemed to "show nothing wrong", ALL of a SUDDEN, guess a bird did it. ;) and now it DOES SHOW something wrong!

My first thought, and I am almost 100 percent sure I am right, me getting that phone call yesterday, was ALL tied into MOM, and that lab work she had done about 2:00 pm yesterday in the office... and all of her questions led up to someone deciding it could be that THEY BETTER go LOOK, since my bet it NOT ONE SOUL saw those lab results until yesterday. I thoroughly believed they were printed, put on the PA's desk or possibly the Doctors, and they told the nurse to call me back and tell me nothing showed up. If I were a really betting soul, I would be betting lots for sure.

I also believe that after Mom's inquest while she was there, did some shaking and moving.  I am sure our doctor heard it all... and you can believe he probably has those results, and he had looked himself yesterday and saw that there WAS A PROBLEM! Also, I had asked Friday for those to be sent to me from the labs. I ever got them. So, yesterday, I asked the nurse to please find somebody that can send those labs to me today! And this is now I know how new the bunch is... I've had 4 people in the past couple of weeks tell me that have no clue how to "upload" or work with the "patient portal"!!!??? WHAT!??? That is what it is for... so WE can get OUR results etc... and not have to wait for someone to copy it, mail it etc... with the few keystrokes it takes, it is on my portal and ready for me to read. So, within about 45 minutes sure enough it was on my "portal". AND right up AT THE VERY TOP... the first thing that was "abnormal" and way out of range was the "bacterial yeast infection"!!!

Then I go to the dentist yesterday morning, thinking he was going to begin "patching" and working on the ones he could. Well, nope, he ONLY looked, and said well I see at LEAST 6 holes (in 6 different teeth)... 2 or 3 at least hurting on the right side so badly, I cannot stand anything to touch them. And guess what... he is out of the office until next week .... and he can't even begin until next Tuesday... and he has osteoarthritis so bad in his hands... he cannot do many things. like he can't extract a tooth at all... and all the time he works on you...he moans and groans... I feel for him... he is not that much difference in age than myself a few years older, but basically his career is almost gone... and it sucks... BUT it also sucks that now I have to wait IN PAIN until next week. And further more, he won't really even know about whether he can "patch" anything... once he begins looking they may ALL HAVE TO BE PULLED! So, even that has been weighing on my mind... I have the other dentist here that my dentists sends me to when it is something like having a tooth removed that he can't do any longer. But, the more I wait the worse they get. So, I am trying to decide whether to just go to the other dentist for all of it... but I do know he charges quite a bit more also... and if I have that many... then even just to pull the damned things will be over 100.00 EACH! I might as well go to the oral surgeon, have them all pulled and begin on those "snap in" type of dentures. Which if Humana will do as the woman told me on the phone, and PAY for it since this is caused by ILLNESS, then the money is not such a huge issue.

Besides with the way things are looking, I am facing dental implants, even though these dentists are not exactly for them, if you can keep a tooth in your head. Well, I agree. Besides my hair, LOSING my teeth was something I swore I would never be able to live with. Well, guess what? Guess I am living with it.

So, then let's deal with this pain pump issue. It finally got refilled Monday, lock me out for 24 hours while the new medication made it's way into the spinal canal, and then I could use my boluses. Well, I thought at that time, from there it would be a good possibility that my body may "adjust" to the Enbrel after a couple of doses, my pain pump would be back as is, hopefully for the most part this stomach mess is going away, BUT we have a dramatic weather change. A couple of days ago it went from 70 DEGREES at 2AM and by 8AM it was dropping quickly. By Noon of that day it was WELL Below FREEZING and the wind chills were sitting at a new record of about 4 degrees. I knew two days before, that we were going to have one hell of a change, my entire body was screaming out about it. Sure enough it hit... and the pain just went down hill faster than the temps did... as of now, the pain is in so many places, and It hurts is so many different ways... I cannot begin to even describe how badly it really is.

I don't know about the dentist yet... and how I will handle it all. I took my 3rd injection of Enbrel this morning...  and I know it is early, but I do not see any difference, in fact I feel worse. Now Jim has the chills and body aches again, and has been feeling "flu like" symptoms since last night.

ALL of the lists, of lists... of the list and the other lists that I made... are NOT getting done... I can't seem to think about one thing for very long, other than PAIN! If I get up and do something, of course it takes my mind off the pain. But, then I am NOT getting anything else done, and I don't have anything ready for the trip in less that two weeks. Under the circumstances, and if things do not dramatically improve with my pain and health, there is no way I would make the trip anyway. I am so fatigued, run down, hurting, not sleeping, could care less about what I eat, anything... I have had everything from  a piece of cake for breakfast to graham crackers, apples and peanut butter. Or toast, or you know mainly something I don't have to chew very much. I was drinking coffee yesterday morning and slivers of teeth were coming off! And I was NOT eating anything!

I tell all of this, and there is yet much more to finish this... so there maybe a 3rd "method" to my already slim to none, to insanity of my brain before I am through with it.

I will say this.... I am working on doing some things for the Arthritis Foundation in regard to some advocacy stuff a couple of them asked me to help out with.

I want to ....talk about there 3 BILLS - Congressional Bills... pieces of Legislature that are going to effect ALL of us.... especially those with chronic pain, chronic illnesses, autoimmune issues... plus Pediatric issues also.... here are the numbers of them and a brief description... if you have time... take a bit and go to really SEE and UNDERSTANDING the critical issues of these... and just how much worse things will be if we don't make changes NOW!

There is much more on the Arthritis.org website! Take a look under advocacy and you will see what they are addressing in 2014 as priorities with Congress. Write or email your Congressional Leaders, Senators, House of Representatives, the President of the USA, the head over Medicare/Medicaid.... and any all you can find that have to do with these bills and laws, or any others pertaining to our health and well being... call, email, twitter, post on FB, snail mail... but DO SOMETHING! If things were not so BAD as far as Medicare and that entire ordeal.... I, nor many of you would be in the horrible shape we are in.....

 Patients’ Access to Treatments Act (H.R. 460)

http://www.arthritis.org/advocacy/advocacy-priorities/high_costsharing/


H.R. 1827, the Pediatric Subspecialty and Mental Health Workforce Reauthorization Act

http://www.arthritis.org/advocacy/advocacy-priorities/pediatricrheumatologist/


"Post-Osteoarthritis and Rheumatoid Arthritis" in the Peer-reviewed Medical Research Program, Congressionally Directed Medical Research Program of the Defense Appropriations Bill, FY2015 


http://www.arthritis.org/advocacy/advocacy-priorities/dod-research


Part 3 to follow!