Showing posts with label arthritis pain. Show all posts
Showing posts with label arthritis pain. Show all posts

Thursday, March 12, 2020

Specialists-A WASTE OF TIME & MONEY ON A SO-CALLED (NP) DERMATOLOGIST WHO KNEW NOTHING!

Going to a "Specialist", Getting NOTHING but MAD, when they do not know a thing about WHY you were sent! When My Rheumatologist (NP) & My PCP BOTH already had agreed I had "probable Psoriatic Arthritis"


I've been "waxing and waning" at least 4 months, maybe more at this "sudden acute break-out" that started on the outside of my right ear, sudden big "flakes" on my scalp (NEVER HAD that before at all", then the top part of my upper chest, and my upper shoulders, a spot over my ears, and one on my nose, then on the side of my face... and a bit on my right wrist... ALL APPEARED.. they are round, at the time very, very "flaky, thick" almost as if it had been a sore that took a long time to heal. But, no itching, looking horrible, and no sign of getting better, just every one of them flaked every day... I tried everything I could think of, yet nothing seemed to be helping.

I did my own "research" and found with my other Autoimmune issues, the RA, Lupus, Sjogren's, Raynaud's etc... and my joints getting worse with stiffness, pain, beginning to "twist and turn" all of my knuckles on both hands swollen, I felt it could be Psoriatic Arthritis". 

I had seen both the PCP & the Rheumatologist (NP) BUT this was after 3 months of them beginning to heal. They could still see it on my scalp, and how it flaked off a few places, BUT OF COURSE they had began to look a bit better. As always, about the time you begin to get well, & go to the doctor so then they cannot get a good idea. 

BUT, everywhere I had one, a round white scar almost with a bit of a sunken spot in it developed. Plus even now I still have a couple in my ear.

So, after waiting weeks, getting into a "Dermatologist" & try to avoid Dallas, I found one closer. I go yesterday, & before I went I called & asked if there were any "precautions" they were taking, other than the normal ones for the Coronavirus. Well, the lady on the phone about half acted as if she didn't even know what I was talking about. Then she said, "we are going by what the authorities are saying. So, still a bit hesitant with all of my other issues (even the pacemaker, it's been there 7 months but it can be like the autoimmune illnesses, a complication, even with the flu etc. I always am very cautious during the flu season. 

So, I go into the building, NO HAND SANITIZER, NO WIPES, NOTHING... not at the door, at the lobby EVEN NONE IN THE RESTROOM! Well, by now I was a bit nervous. Of course I had my own, so I put some on, after washing my hands, and & went to find their office. Again, I go in the office, NO HAND SANITIZER, WIPES AND EVEN NO KLEENEX!!! NOW I was REALLY getting to the point I wondered if they took "any" precautions. There was NONE in the rooms, and other than a very small "posting" you could barely read on the wall in the waiting room, NOTHING about it! They called me in, the nurse NEVER asked about a fever, if I had been exposed possibly, or had been out of the country. Plus again NO HAND SANITIZER, NO TISSUES, NO SIGNS POSTED, NOTHING. SO, that was bad enough, then she was an hour late!! And she "barely" looked at anything I was trying to show her, or listen to what I was saying. And just said, "I don't think it is psoriasis"and I asked what about these white round "scars" left? She had NO answer... for one thing they are ugly & with spring and summer coming it is bad enough with the scars I have due to surgeries. So, she basically, told me the same thing I knew, about lotions, what to use etc.. and said "if I have some that come up she can see "better"then call & come back. 

By this time I was fuming and disgusted, and she even tried to shake my hand! I almost walked out without paying the co-pay I was sob freaking peeved! I left there upset in tears, ruined my day, when I could have been home working on my lawn, a waste of gas and money for a co-pay I should really not have owed. I paid it, hurried out, used my hand sanitizer, then went to the restroom and washed my hand... & the closer I got home, the more upset I got.... I wished I would have taken pics when the places were so bad... so, at the last I asked her "would Enbrel be a medication they MIGHT USE TO HELP THIS?"  SHE SAID "YES"... one of them & there are several others out they use for it. So, I said well I went back on my Enbrel about 4 to 5 weeks ago. So, I told her that, & she said well let's "hope", that will help. (So all of the paperwork I filled out over the previous weekend, along with medications, illnesses, surgeries, whom my doctors were etc... she NEVER even looked to see I was on Enbrel, Prednisone, Plaquenil, & Methotrexate.. because those 3 are the older ones they use... NEVER, NEVER, EVER WILL I GO BACK NOR RECOMMEND THAT OFFICE TO ANYONE! I have had a doctor or two really upset me over the years, but this one really "did not know her rear from a whole in the ground"....




Thursday, December 18, 2014

Missing Many of Life's Amazing Things ... through the Eyes of an Autoimmune Patient



Memories of What The Past Life meant back then, and How to “begin” Anew Once Your Life has been totally turned upside down and pulled inside out…

I started writing this yesterday evening. Then I worked on it some this morning. I have a great deal to add. But, I am in the middle of having the Flu. I woke up yesterday morning with the worst headache, even worse than any migraine... and my entire body from head to toe hurt and ached. I knew I had to been running a fever, thus I was. It started at 99 degrees, and quickly began to rise even after aspirin, Tylenol.... it was already up to almost 101 by the time I decided what to do. First I called my PCP. But was on hold at least 20 minutes with them. Thus even though I did get to leave a message for my doctor, I knew he would probably need to see me. The last thing already figuring I have the Flu, and then my Autoimmune system compromised.... I decided as badly as I felt to go to our local Urgent Care Center. So, I did. Thankfully when I arrived hardly no one was there and I got into see the doctor quickly. He did verify I have the flu. I got the Tamiflu script and he told me to be prepared for a horrible cough to come. So, he gave me cough medication to be prepared for that. Anyway, I wanted to at least get this much posted... and I promise when I am feeling better to finish it.... but here is the beginning of just how much your life changes when an autoimmune or chronic pain or illness comes along...


I had this come to mind yesterday afternoon. I was doing something in the kitchen and I got to thinking about just HOW MUCH life has changed within the past 20 years. Some of those things are okay to gone and blown into the 4 winds. Some although, have created turmoil in our lives, and honestly it scares the hell out of me.


When I think back just 10 years ago, Jim and I had first met, in 2003, on a Memorial Day Weekend. I was searching at that time for the “one” special person in my life that I could share everything with. I actually went to Seattle thinking I had found him. Yet, that relationship was never meant to last. As I’ve seen and felt now, I realized that relationship was never really meant to be. It was more of a stepping stone to get me out of Texas, out of the horror of Domestic Violence that had been dragging me into the black hole of no where. I needed a drastic change in order to get my own life back, to get a new perspective on life, and a new, The ”odd”  part of it all, is I went not truly prepared as far as my clothing, my attire was more for a lighter cold, and not a heavier cold weather. Fortunately, the weather was fairly nice at that time of the year (I had arrived in Seattle at 8:00 pm Halloween Night 2001).

I think back on the times even before Seattle, before the Autoimmune Illnesses began to rear their ugly heads. Those days are for the most part all gone. The years I could decorate my entire home for Christmas. From the kitchen, bedroom, to the living room, kids rooms, bathrooms and even outside the house. Everything was in a “Kris Kringle” theme. I was always so Christmas oriented, and I never wanted it any other way. That was just one piece o the puzzle of life, that always seemed to make sense. 

Never back then did I ever give a thought that life would be “different” and that I would not be in a situation that I could no longer do so many of my daily living activities that I had become accustomed to over the years. I had a few instances that due to Migraines I was to bow out and not attend a few things. Yet, never would I have dreamed within 10 short years, I would never be able to do so many of the things I loved to do again. But, it had and had happened.

I can’t blame it on anyone or anything, I’ve just fallen into a realm of life, that has robbed me of the beautiful things I used to be able do. This is an insight as to just how much my life, as well as many others lives, have changed from the bottom to the top in so many different ways. We don’t even realize how many things are never the same. I think we become so complacent in some ways, while our concentration then goes to other places where we never had to go. For instance, new doctors, all of the different diagnosis, medications, what we can do with diet, exercise, different and alternative ways to help ourselves feel better. I think for me I went into the “untrue” mode. I refused to believe I had a chronic illness or illnesses that would take my life and flip it all around. Then for many, we go from doctor to doctor, fighting insurance companies to pay, finding out some doctors that we think “should know” about our illnesses do not. Physicians had so “specialized” themselves to the point that one Rheumatologist may deal with RA, but not really treat Lupus. Another may deal with Lupus, but not really deal with MS. Multiple Sclerosis in itself a strange disorder. It is more of an “autoimmune illnesses that harms the nerve endings” thus often time a certain type of Neurologist maybe the doctor to see. Yet again some Neurologists know little or do not really treat MS. So, it can be an extremely frustrating, trying, wanting to give up time that will actually take YEARS in many cases to get the “right” physician, who knows the correct information, and can properly give you a diagnosis, that ultimately can then be addressed and treated.

So, a couple of days ago, I got to thinking about the “little everyday things” I no longer do. The list continues to get longer and longer. I no longer cook as much from “scratch” as I used to. Baking has always been one of my favorite things to do. An example is just about every year since we moved here in this house, I have made home made pumpkin, date, banana breads and more. Then one year I actually made “mini-loaves” of fresh home made baked bread right out of the oven. It turned out so beautifully. I also make sugar cookies, cut out and decorated, fruitcake from my own “family” recipe, fudge, sometimes peanut brittle, cookies with the kisses in the middle, and more. We always wrapped it all up individually in decorated plastic wrap, then made a “Christmas Sack” for each of our 5 closest neighbors. I was a highlight of our holiday. I spent weeks and weeks baking and cooking hand and home made everything.

This year things are so just under the radar of holidays, that we probably not give anything to the neighbors, if so it will be only a few slices of fruitcake. I’ve not made any of the breads, the cookies I am not sure if I will feel like it, especially now since I have the flu! I don’t do as much baking from scratch at all, but have had to go to boxed cake mixes and store bought frosting. Cookie mixes rather than me put them together myself, and same way with pies. I often buy the “canned” fruit, or creme - like key lime or lemon, then I do make a crumb topping for them. So, that is just one of the many things, I no longer am really able to do. Either fatigue, or being so slow at everything, or being in pain, or feeling ill… even my own “daily home” cooking has fallen below “home made” which is NOT good because everything is full of salt, sugar, even the “light”, “low fat”   or low carb stuff tends to be not that healthy at all,

I used to mow my lawn, and do all of the yard work. From planting, to gardening, to flower beds, and house plants, I did it all. Now I do well to half way rake up leaves, a couple cans at a time, and forget the mowing, weed eating, and even trying to hoe is very difficult for me.

I can no longer wear my 5, 6, and 7 inch platforms heels. I have loved those so much even before they became all the rage again in the last couple of years. I have 3 pairs of very high heeled platforms that I totally dream of wearing again. When i go into the shoe store it almost makes me sick to see all of the incredible high heels and platforms. yet I cannot even attempt
to think about wearing them out in the public. I would certainly now fall, due to my artificial knees, and taking a chance of a fall, just is not appealing when I have “severe osteoporosis”.    

Of course no snow skiing which was my biggest thrill. I can still somewhat play the keyboard, piano, and I can still band around a short while on the drums but not for long.

Some things I can do, but it takes me 20 times longer than it used to. If I am getting dressed to go out somewhere special I must start at least 4 hours early if not more. I am then lucky if I am ready on time, Even typing this, of course I also have the flu at this point, but my wrists, thumbs, hands and fingers are beginning to hurt and become too stiff to type. The brain fog hinders what used to be a mind that could spin around in 15 directions all at once, and I could multi-task and get them all done and feel wonderful as I did them. I miss college classes. I miss being able to walk 5 or even 10 miles a day. I miss traveling, vacationing, heading out for a weekend  get away.

I get sick of planning a day around being sick. I hate getting up and never knowing if I will feel “okay” or horrible that day. I am pissed that I can’t do things like put up my light fixtures, finish mudding the bathroom walls, painting the outside of the house, laying my flooring in my bathroom and kitchen and all of the DIY things I used to do on a daily basis, never giving a thought that I may not be able to do the little things, like get flowers for Christmas out to Dad’s and my Grandparents Graves. By now I would have Dad’s Tree out there all decorated… and Poinsetta’s for my Grandparents.

Sometimes it is difficult for me to type, to write, and to clip coupons. My hands don’t seem to work as well, and neither does my brain. I FEAR that if I don’t write my books (the next 2) very soon, I may lose the “brain power” wording, spelling, and aptitude it takes to write a book and get it published.

There are days that even the simplest words seem impossible to spell. Maybe the simplest sentence I have problems with finishing properly. I am one to NOT use the same word over and over again. But, without the Thesaurus, I would never have the brain as I used to have that remembered everything, no matter how large or small it was. Days I lose that ability to find them within my own thinking.  I used to be a grand speller. I had 100’s on every spelling test and then I won many spelling contests because I was so great as a speller. People cam and asked me how to spell a certain word, and used to I could rattle it off without hesitating.

Being able to learn new things. That was my forte’. Any and everything I didn’t know something about, and was interested, I wanted to learn. And, I did. Whether it was flying a plane, or knowing how one flies was remarkable to me. Even my “Annual Christmas Letter” that was usually all decorated with a border and colors for the typing, got left with me printing the letter on regular paper, in black and white, with no border. It was too much this year for me to deal with and I knew I needed to get the cards out before it was too late!                                                                                                     




More to come......

And thus it continues... the brain fog is so bad, I forgot I had already posted part of this... so here is more.....

Even at this, I am almost feeling like I got "off topic" of what I wanted to say... but I shall post this next installment....

It continues to be the “little” things I had enjoyed so much in my years before I became chronically ill. I was able to do just about everything from going to college full time at night, working full time, taking care of my two kids, a home, a mortgage, car payments, and everything that goes along with those things.

The day that I knew for certain I would no longer be able to hold down a full time job anymore, was on of the most depressing, the saddest, the fearful, time of my life. I had no idea how I would make it in Seattle. Jim and I had already met, but he was living with a friend over by Lake Washington, he had a full time job, that actually was knocked to part time, so he had his own portion of rent and bills to pay. I was very leery of anything at that time…. from even thinking about Jim and I, we had just really met, to finding another at least part time job. I had rent monthly, and a car payment monthly, plus my bills which were not that bad with just me. So, I looked actively for a job daily, from the paper, online, asking around, and even went for a couple of interviews both at banks. Both seemed like great positions, but they also seemed very stressful, and it would mean me working MORE hours that I already had been working, which was one reason I got ill in the first place. So, I was offered both, but turned them down graciously. This was about time my lease for my apartment would be coming up. I knew that the woman above us was not thrilled with our TV (which was a 16 inch tiny TV with an antenna inside, or she would gripe if we smoked outside on the deck… said she could smell it… well there were lots of wooded areas, and honestly I think she was just jealous that I had found someone that was coming over fairly often. Anyway, the problem was my own next door neighbor. He was the one with the very loud music and television. But I knew I needed to go and not sign into another year’s lease. So, when it came time to make a decision, I decided to take my stuff, and move in with Jim and his room mate. It seemed “smart” and cheaper at the time. We did have some beautiful memories of Lake Washington, and it was an incredible several months we spent there before we decided it was more than time to move out and find our own place. We did just that. We moved just North of Seattle into Everett. Smart move, loved our apartments and the manager was such a sweetheart….

 It seems from there things began to look brighter… and then in 2005 March, Easter Sunday, I lost my Dad to a brain infection from a knee surgery that just never turned out right. He had that surgery on Feb 15th 2005 my birthday. So, there is always mixed emotions when I try to celebrate.

We found ourselves going ahead with our marriage plans in Vegas about 10 days after going back to Seattle, for I knew Dad would have wanted it that way. Then we also knew it was only a matter of time, and I would need to be back in Texas, close to my Mom. Being an only child, and my Dad took care of everything, Mom was not even able to put gas in her car.

At the time, I had already hired an attorney, and was in the process of my 2nd appeal for my Disability, Social Security benefits. After a short time in California, for a job Jim got that was not working out, we loaded up the U-Haul once again, and headed for Texas. We had no clue what we were going to do when we got there, but we knew we had to come back. So on December 19th, 2005 we arrived in Ennis Texas. I had already checked on apartments, so luckily we got into one just a couple of days after arriving. They were so nice and hurried to clean it, touch it up and laid new carpet. So, we celebrated that Christmas in Ennis. Actually both of my kids, and my two Grand children got to come up and we had Christmas at our apartment. We had bought the very last “real” Christmas tree in town, and it was scrawny but we decorated it, and it turned out beautiful.

We spent a year there, and in about August 2006, I got word I would need to make a trip to Seattle for my “hearing” for my disability. We flew back, not knowing what to expect, and when we left I did not know for sure if I had “won” my case or not. It might be a month before the judge sent me the letter. But, I could tell from his comments in the hearing that he probably would give me a favorable outcome. Thus about 5 weeks later, I got my letter saying I did get my full disability and they paid me retroactively back from 2004, so I got a fairly good sized check. We looked for a house, small, but something we could work on, yet not too much work, and thus we found our house in December 2006, and got to move in after much DIY renovations, paint, redoing floors, and so forth, at the end of January 2007.

My disability then meant I had Medicare. I took a Medicare Advantage Plan, and then the real fun began. I had 8 surgeries in  2007 alone. Two total knee replacements, a shoulder replacement, wrist surgery, bladder surgery, my other shoulder had been scoped, and my hips injected a couple of times. My left elbow had surgery, and the right one was giving me issues, but I was fortunate enough that my right elbow and so far both hips have been able to stay together enough that the corticosteroid injections have kept me from having surgery.

In 2009, I went to a new PCP (Family doctor) that after a couple of months of seeing me, did a great deal of blood work. I had even mentioned Lupus, RA, or some other type of autoimmune disorder. He thought so also, thus the blood work came back showing I was positive for probably Lupus, RA, and later confirmed I had Sjogren’s and Raynauds.

After those diagnosis, things went nuts from there. Rheumatologists, several that really were not specializing in my type of issues. The pain had already sent me to a pain doctor, who was treating me for the chronic pain, migraines and all of the pain that went along with the AI illnesses. In 2010, he made the decision I needed an “internal pain pump” to try and get my pain more under control. So, October 2010 I underwent yet another surgery, having it put in.

All of that and more are why my heart breaks when I watch someone on Television skiing down a slope full of white powdery snow. Or, when I don’t feel well enough to go out to the store, or to even sit here and type. The brain fog causes me all kind of issues, from having to make list after list …. Even writing this, I did not recall that I had already posted a portion of it on my blog….
                                                                                              



Saturday, August 16, 2014

New Post - My Letter to Congress in Regard to Arthritis, Autoimmune Illnesses, Medicare, Advantage Plans, Medicaid & Just How We Lack All We need to have a "Quality of Life"

I just completed this email below. I've been working on it for what seems like weeks. Due to ALL of the doctors visits, Jim going to Rehab twice weekly, my visits with my dentist to get my dentures (which I am already having "flare" issues I think with the Lupus, Sjogren's and RA) & numerous other things that have had to be taken care of, I've had to write this in between all of that. Finally, this morning around 1:30am I woke up needing a drink of water. Not realizing my foot was so "asleep" I got up and immediately went to the floor, with a very "twisted" left ankle, that left me in tears. I tried to go back to bed, but there was no use. So, at 4 am I got up, and decided to finish the email, and try and get some things done on the computer and on line that have had to be put on the back burner due to all else going on.

I am sharing the email with you. I am also sending it to my own House Representative, and to several others in the Federal Government that I feel can and may try to do something to help not just myself but ALL of us. Here is the email. My hopes are that YOU will write your own and also email it. The Arthritis Foundation sent out a newsletter about 10 days ago asking for us to all send in our stories to the email address that will be listed below this one I sent....

Good Afternoon to All In Congressional Representatives,

First of All, I want to thank, House Energy and Commerce Committee Chairman Fred Upton (R-MI) and Rep. Diana DeGette (D-CO) recently who announced a bi-partisan initiative, called the “21st Century Cures: A Call to Action”. This will certainly help to shed some new light on chronic illnesses, and especially those new diseases and illnesses, that at this time, like many types of Arthritis, (Rheumatoid, Osteoarthritis & Juvenile to name a few), that have NO cure at the time, little known about “why” those who all of a sudden get the diseases, why others may not, what medications we need in the future to either put these illnesses into remission, OR CURE them…. even STOP them before they ever do the severe damage they do to all of us suffering daily dealing with ALL of this issues these horrid illnesses bring into our lives. I hope many of our other Congressional members will stand beside HECC Chairman Mr. Fred Upton and Representative Diana DeGette and help to make this “Call to Action” a huge success for the thousands and hundreds of thousands suffering from various forms of Arthritis and Autoimmune Illnesses.

I am an “Arthritis Patient", that suffers from several various forms of autoimmune arthritis, as well as osteoarthritis. My list of diseases, illnesses and syndromes; Lupus, Rheumatoid Arthritis (RA), Sjögren’s, Pernicious Anemia, along with many issues brought on by thee illnesses, such as a heart attack at 40, severe pain, swelling stiffness that all have consumed my quality of life at times so much, that I feel the diseases rule my daily living. At the age of 15 I had my 1st knee surgery. At that time, they knew little about Juvenile Arthritis (JA), and the experts really did not know much about RA, and all of the other arthritic and autoimmune illnesses here in our nation. So, I went for years from one physician to another, trying to find out why all of my joints were “falling apart”… by the time I was 40, I had already had a left elbow repaired, a left shoulder repaired both knees had surgery at least twice back them, plus all of the other “symptoms” that most doctors at the time “blew off” especially when it came to women. They for the most part thought if I woman complained about aches and pains, she was either nuts, a hypochondriac, was having “female” issues, or was depressed. That was the huge one. The answer from most doctors to a woman with “mysterious” health issues was to determine they are depressed and fill you full of anti-depressants that did nothing for the “physical issues” that overwhelmed you. Still I would hear, even with the severe migraine headaches I had, the weakness, & still other signs and symptoms that should have never been looked over, but taken seriously.

In 2009 I FINALLY began to get some “answers” that made sense. I was not nuts, depressed, making it up, had female issues etc…. I had an “autoimmune issues or issues” that were ruining not only my joints, but also causing he severe fatigue, all of the joints and surgeries I was having… including both knees completely replaced and my right shoulder had to be replaced, along with a 4 level cervical surgery, for degenerated disc disease, and now my thumbs, fingers, toes, and ankles are “eaten up” by RA.

I’ve jumped through hoops and hoops for a very long while over my medications for these diseases. When you have a serious illness, and medications come out that may “halt” or at least give you a huge percentage of reprieve, so your quality of life comes back & your doctor feels the medication is necessary, there should be NO ONE at an insurance company, or throughout Medicare to tell your doctor differently. These ridiculous amounts of forms, paperwork, having to be put through 4 or more medications that DO NOT work before the ONE that does can even be considered, makes for a patient becoming worse by the day, paperwork and red tape costing precious doctors time, insurance people who have no clue what the entire thing is all about, and it is a vicious cycle of “stuff” in order to finally either get the medication you NEED OR be turned down, which really is asinine. I have been through I cannot tell you how many “pre-authorizations”, sending medical records, my doctor having to fill out forms which they should not have to, talking for literally hours on the phone trying to get to ONE PERSON who can “fix” the problem… and on the computer sending emails, sending messages, and as I said, all the while suffering from these horrid diseases that each day wreck my joints and my body a bit more each day. Any type of “autoimmune arthritis” such as RA, effects NOT JUST the joints. They are “ systemic” in nature & can effect the heart, lungs, kidneys, your hearing, your eyesight, your memory, your blood, your stomach, intestines, and so on. Just about every part of the body can be effected by any type of autoimmune illness, and can reek havoc in just a short time without proper care.

One of my horrors with one of these “Autoimmune Arthritic” diseases is Sjögrens. This is just one that they do not know nearly enough about. The doctors know it effects the mucous  membranes, which we have all over our bodies. Our mouth, which is how saliva is formed. It keeps our eyes moist, our intestines, and many “linings” in our organs have these types of member in them. Without them, organs like the inside of the mouth, dries out so badly, you cannot even speak, swallow, and the worse cause horrendous “dental caries” and other issues! Yet, I was not informed of just how quickly and how badly my teeth might be effected. I brushed daily, tried my best to chew sugarless gum, sipped on green tea all day long, and used the special toothpastes and all of the “remedies” for dry mouth. Yet, about a year ago, all of a sudden one evening we were eating dinner, and an entire back of a molar just fell off in my mouth! Within the course of 3 weeks I had 3 more teeth with break off at the gum line, or a half of a tooth break off. Then suddenly almost every tooth had either a large cavity in it, OR would crumble off on the edges, and I knew I had to get assistance quickly because I was losing all of my teeth, and in a time frame that was not going to allow me to wait even a month or two.

So, I began trying to find an “Oral Surgeon” and/or an Oral Surgeon/Maxillary surgeon that would take my Medicare Advantage Plan “Humana Insurance”. Well, I have yet to find ONE dentist, oral surgeon, and so forth that will take my insurance, EVEN THOUGH this problem is caused from a physical ILLNESS, NOT just regular dental caries. This is a serious matter, that I spent weeks and weeks calling dental offices, and researching online, first of all, WHAT I truly needed done, and a Dental Doctor that could do the procedure, and try to help me get some of it paid for by my Medicare Advantage Plan. I literally spent days and days sending emails, making phone calls, sending messages to dentists offices, all to no avail. In other words, (unless you have had to price these types of dentures called “mini implants”) I was going to have to cough up anywhere from $8,000.00 to some the charge $16,000.00! Now these are the dentists that have been through enough “training” to do certain types of “oral surgeries”, not the Physician Dentists, the true Oral and Maxillary Surgeons MD. I am sure when you look at the fact they usually put you under complete anesthetic in an operating room, and have several nurses and so on assisting them, they charge I would say $25,000.00 and UP! By the time you pay his services, a anesthesia doctor, all of the charges for an “outpatient” stay at a day surgery or hospital setting, I know from the extensive surgeries I’ve had due to all of these horrid, life altering chronic illnesses, it certainly would be a great deal more than $8,000.00. And “they” MAY be able to get my Medicare Advantage Plan to “pay”… with some pushing, pulling, red tape, & lots of time before I could have anything done, BUT the insurance ONLY PAYS 60% of any type of “dental” procedure no matter if the problem has been caused by an Illness! So, that means by the time you added up all of those “extra’s” involved where I would have to travel back and forth from Dallas many times to get it all done (so far I have had about 5 appointments to do all of this, and still have another at least 3 to go)… thus you are looking at the cost of gas, parking, and what if something happened after hours or a weekend? Like a dry socket, of which I had one, and also the start of an infection. But, I am within 5 minutes of my dentist/oral surgeon, thus I can be in there and getting care within an hour or two. And I am sure if something happened over the weekend that called for attention, he would go to the office and see me. Now, as it is, after an almost “deadly” car accident that my husband (who more or less has been my “caretaker” now for almost 10 years) last March. An 18-wheel tractor trailer “ran over” him from the back. Aa of now he is barely able to walk, much less drive anywhere. So, I have only myself to depend upon. My 2 children live 8 or more hours away, and my Mom, who I am “watching after” and helping out at times, can barely drive to the grocery store and back home that is about 10 blocks or less, thus there is NO way I could have been going to Dallas, being “put under” and driving myself home.

This part of my story only touches the “iceberg” of what I’ve had to endure. Lupus, RA, Sjögren’s, Raynaud’s, Osteoarthritis, Migraines, two heart attacks, one at the age of 40 (now they think the Lupus may have caused them, but that was years ago before I was diagnosed), plus all of the complications that go along with these illnesses. They can “attack” just about any part of the body, from the brain, to kidneys, to your heart and lungs, blood vessels, skin, and that list just goes on and on. As I have come to find out also, once they “finally diagnose” you, more than likely you have “several AI’s, causing the problems. (AI- Autoimmune diseases). We NEED HELP! WE NEED more RESEARCH, TRAINED PHYSICIANS ON THESE ILLNESSES, including DENTISTS, MORE MEDICATIONS, TO BE DIAGNOSED EARLY BEFORE all of your body is falling apart from them. We need to find out what causes these chronic illnesses, whether heredity, or caused by something later in life. The number of people (WOMEN rank MUCH HIGHER in getting any of these than men), grows each day. Some of us, like myself, may have been ill for many years, 10 years, or more BEFORE they finally get a doctor who takes the time to sit down, and put together the pieces of the puzzle of someone with one or more of these illnesses. But, doctors are overwhelmed, underpaid, and just do not have the time, even as specialists, like Rheumatologists, to really EXAMINE a patient, and there past medical issues to find out their patient is ill with a disease that could have been there for a decade or more, By the time mine were found out, I had already had both knees replaced (after several arthroscopic surgeries), an elbow surgery, arthroscopic surgery on both shoulders, my right one now replaced completely. I have osteoporosis, and mine is “severe” in range. I have the bones of someone 80 plus years old.

This past 6 weeks have been especially an extremely fought time for me. Due to the Sjogren’s literally eating away from the inside out, and no one knowing it until it was too late, I have had to endure having two sets of 5 at a time teeth pulled, much of it difficult due to the teeth being so brittle, thus difficult to excise, then after going through a couple of times trying to make sure the complete regular dentures will fit right for now, I went through a couple of visits for that. I finally got my “new teeth” just this past week on August 12th, 2014. Yet, I still had 11 teeth that had to be pulled all at once, then my gums were sutured shut, after my dentist had to do some “filing” to my bone so the dentures will fit properly, and then my gums were sutured closed in the front, top and bottom. I did then immediately get my dentures put is, but of course with extremely swollen gums, suturing and a great deal of bruising due to all of the local anesthetic being put in the syringes, then the extracting in itself, my gums developed some very sore spots, and even several mouth ulcers. Those I get with Sjogren’s to my dismay. I HAVE to be able to wear these teeth, since I have none of my own now. And I cannot have them “modified” to be held in with the “mini implants” until the bone is completely healed from where all of the teeth were extracted first. This process could take 90 to maybe even 120 days. My problem is trying to have my own mouth accept them, due to the issues of ulcers, and other problems I develop in my mouth due to the Sjogren’s. Then even at that there is already over $4,000.00 paid all of my pocket to get this far with the dentures. Then in another 90-120 days, there will be another $1200.00 (what was “left off accidentally the original treatment plan to pull all of the 11 teeth left) that we were not expecting, then another over $3,000.00 just to have those four “mini-implant posts” put into place in my gums, then the dentures modified to fit properly on those posts. If I could wear the dentures as they are now, I may not have to incur the last $3,000.00 plus BUT I can already see since I am suffering from ulcers, (probably a bad flare of the Lupus, Sjogren’s, and RA) from all of the trauma to getting this far with the dentures, and all of the other very stressful things going on in my life at the present, it has brought a bad flaring up of the autoimmune illness. When this happens, I can have everything from those types of very painful mouth issues, severe Lupus Headaches, severe fatigue, swelling of my joints, the “mylar rash” on my face, & numerous other symptoms that are from these illnesses. It is shameful the amount of time, the loss of quality of life I have sufferer and continue to suffer, the lack of enough research, medication, doctors, and other medical items that may help to put these illnesses in permanent remission, or not get them at all, then I have to fight “tooth and nail” (no pun intended) to get my Medicare Advantage Plan to pay a dime, especially when it comes to anything to do with the huge burden of expense of all that I have endured with my mouth, and the Sjogren’s that causes it. I want to see this change, for myself, and also for many others, some I have met recently that are going through the same situation that I am. Most of them like myself, really taking on a very heavy financial burden because they cannot get Medicare or a Medicare Advantage Plan to cover any of this even though it is a “medical” problem, not dental per se. For some $9,880.00 plus (because I already had several teeth that rotted down to the gum and had to be pulled before the procedure of getting my mouth ready for the dentures) may not think that is a great sum some of money. BUT, someone living on Social Security Disability, and the spouse (my husband) that had been my “caretaker” for the most part, then he was in a severe, almost life taking vehicle accident on March 26th, 2014 and spent almost 4 months in the hospital, with many complicated injuries including his spinal cord. Thus now he had massive health needs, puts even more of a burden on my life and on his that I an barely begin to tell about. He was hit from behind by an 18 wheel tractor trailer that day, and rushed to Baylor Emergency in Dallas, where he was operated on for basically a “broken back”, 7 broken ribs, and the list of injuries goes on and on. So, us trying to take care of one another is a daily struggle. Again we begin all over to try and find proper physicians for him through the system, and much like I have come to find out, many doctors are refusing to take any Medicaid patient, and now even worse, are refusing to take Medicare patients, due to not getting paid properly, and in a reasonable time length.

I would like to see for one Medicare or these Medicare Advantage plans cover MORE on something such as Sjogren’s, that is not “dental” in nature, but caused by a physical illness. I would also ask that rather than put up a road block, where the patient cannot get through to anyone at Medicare to explain the problems, or be able to get our doctors and dentists to be able to help get these types of things paid for just as any other type of chronic illness. I cannot express enough the huge amount of emotional, physical, mental, and financial anguish I have been through, and still have more to go just to be able to eat. But, my teeth are what can sustain my life, and without them, I am at risk for all types of other physical and emotional issues.

I realize we have many people in our nation, and around the globe in need of all types of medical attention. Yet, in a great nation such as the United States, our people should not have to bear such a hardship, and not have anywhere to turn to get any type of financial assistance with something so critical as your teeth. I did NOT cause this, the disease did.

I ask you to see if there is a way to change this system, give help to get things like this paid for or at least a good portion paid for by Medicare and/or a Medicare Advantage Plan. I ask you to get the funds out there to get more specialists, so we have enough doctors to are qualified and trained, that have went through a major study of these life altering illnesses, and can give us back our quality of life, and find these illnesses and have the ability to treat them before 5, 10, of more years go by and the damage has already been done.

I feel I do my part by voting, by participating as a volunteer, activist, and Ambassador for several organizations that are trying to change the face of Arthritis, Autoimmune Diseases, and all of the other medical problems that come with them, I sign petitions, I send letters, make calls, and send emails. I am somewhat limited to do what I can medically and monetarily, but in the ways I can try to stand up and make a difference, I give it my all. Now, I ask you do to the same. Stand up for all of us that want our quality of life back, to be able to do the simple things in life like eat, do a hobby, work in a garden, or whatever you may want to do, by giving the way with funds, research and voting for bills that will reduce the terrible burden off of those like myself.

Thank you for your time and for listening. I hope my “one” voice can help to make a difference.

Friday, July 11, 2014

Spinal Cord injury, Lupus, Sjogren's, RA - ?? Happy 4th (Belated) Hope All is Safe - And What in the World is Happening to our World?

I started off with the title of this such as it is, because This post will be a conglomeration of ideas, of things going on... of how tough like can be... how things can change within the blink of an eye... and no matter where you turn er either have some "natural" disaster, man made disaster, or for the most part , if it is not one thing happening, it is another.
As far as Jim and how he is with the spinal cord injury... which I am just now honestly beginning to truly understand how long something like this can take to even show symptoms.... it can be months and months before the "cord" itself comes out of " spinal cord shock", plus healing all of the bruising, swelling and surgery.
Then I find out about this ( definition ) "Spasticity"(Spasticity is a feature of altered skeletal muscle performance in muscle tone involving hypertonia; it is also referred to as an unusual "tightness", stiffness, or "pull" of muscles. The word spasm comes from the Greek word σπασμός (spasmos), meaning "drawing, pulling." Clinically, spasticity is defined as velocity-dependent resistance to stretch, where a lack of inhibition results in excessive contraction of the muscles, ultimately leading to hyperflexia, an exaggerated deep tendon reflex on stimulation with a reflex hammer (or spontaneous firing of deep tendon reflexes as in clonus.) and how even though he was in the hospital 3 months, went through ICU, Acute Care, and to Rehab; then another Rehab... and out of the "hospitals" and into "outpatient therapy". Let me say that Baylor of Dallas is one "HUGE monstrosity" of a Hospital. And that is not including all of their other specialty's from the Cancer Hospital to the Dental College. We we blessed (if you want to call this horrid wreck blessed) that it happened so close to Baylor Hospital they immediately took him there. ALL of our hospitals have their own specialty's but Baylor is just a "golden" egg for Rehab and accidents with lots of brain injury, or spinal cord and nerves.. they have some of the best there.
I knew I would write about the entire happenings (since there were more than on thing that happened at the same time) that could have made the entire nightmare much worse than it is. Some people may look at Jim, on his cane, with his legs quite "wobbly" at time, his neck sometimes bent over, or his shoulders tend to want to roll forward, and they "wonder" if he had a stroke etc. I usually come right out and tell what (Tiffany) calls the "Elevator" story.. He was headed o I-45 to the DFW Airport. As he came upon the outskirts of Dallas and on I-45 where his has several 'In's and Out's... changing lanes and so forth... for NO APPARENT reason we have yet to see or know, he was HIT from BEHIND (now he was driving 60 MPR which is the speed limit through there) an 18 Wheel Tractor Trailer Rig , full speed rammed him from the back, enough we "think" that then it shoved our car under a "Tahoe" which was in the next lane to Jim's right. Then it seems our car slowed after all of that, but continued to "spin" over into another land and it appears he was slammed again by the tracker trailer --- he was "hit" at least Twice, and at a very fast speed to have done the absolutely horrible damage to what now does not even appear to be a car. Jim, does NOT REMEMBER ANY of this. All he remembers he was head North on "I-45 to go to DFW Airport for a plane to Washington DC, WHERE I WAS at the time this all took place. The ONLY thing he said was 2 "people" tried to get him out of the car & could not, so the firemen came to "cut him" out of the car. Well I think he of course already had "MASSIVE physical damage to his body" as well as a concussion, and the "men" were probably the firemen and the ambulance drivers there. From what I & he knows he was unconscious almost the entire time. I know he did "HEAR" something that terrified him though. We were in the Taco Bell parking lot a couple of weeks ago, and I accidentally cut the corner a little to quickly so it kind of made a scraping sound as a "wreck" might and he almost fainted it scared him so badly. So, I am GLAD honestly he does not "remember" the wreck. I think he would have many more issues mentally and emotionally had he been awake.
I was called from Baylor by a trauma unit doctor, while I was in Washington DC..and what made that so bad, is that his Mom had just walked up & thought I was crying "happy" tears that I was getting to meet her, see DC...and all of that. So, a gentleman who helped me through this entire ordeal took over the phone & got the injury reports, if Jim was able to talk, was he able to recognize, and his injuries were etc. I had to tell Jim's Mom whom I had NEVER met, but talked to over the phone for about 10 years that her son was in ICU due to a very bad auto accident. At that moment I just crumpled to the floor in the lobby the of Hilton DC. I could not think, talk, answer, I had just had news that was so totally unbelievable & that I had no clue how to get home (I was supposed to fly home with Jim on Sunday after we had visited The Capitol, DC, His Mom and had a mini vacation. There was a guy who was just monstrosity with everything that had to do with RA,Osteoarthritis, Juvenile Arthritis, and so forth. He spends ALL of his time when he is not working at Summits, meetings, and putting his efforts into helping especially the kids that like his daughter, was diagnosed with JRA at the age of 9 MONTHS OLD! His name is Chris, and was right there trying to do everything to help me that he could. He went to the head sponsor over the Summits, and Laura who is with the Arthritis Foundation and she had a ticket for me to fly out within an hour or two back to Dallas, so I could go be with Jim. At the time we did not know if he was even stable enough to make it. So, even though I was so about leaving his Mom there alone to deal with it all, I knew I had to get back home and to Baylor quickly. My son, Jason who at the time was in Houst working, got the word and he headed up I-45 to come to the airport and pick me up. He ran into some bad weather, yet he got there about 45 minutes after my plane landed. Chris stayed with me the entire time, checking on me, carried my luggage, getting me through check points with bothering me about my pain pump and so forth, thus we made it on just in time. He was a couple of rows behind me, and I was just blessed beyond words to have had him in our summit "group" and then to help with everything he could do in order that I got home. It was amazing.
As I have written to Laura on several occasions, I will never forget the kindness  the "Arthritis Foundation gave to me in my time of need, and I hope to be able to pay them back and even more in my own advocacy work, monetary when we ever get some of that, & to help in any way I can to make sure I spread the word about how important their foundation is. I have read that already on two occasions OUR SUMMIT in MARCH 26, 2014 already helped to PASS TWO of the three legislative issues that the Arthritis Foundation were there advocating for!!! That is just incredible!
So, here "WE" (I) am in the smack dab middle of my own nightmare with Sjögren's Syndrome and trying to figure out the "mini implants" (not sure why they call them "mini"..... this is certainly no "Mini experience". By the time I am through I MIGHT be able to eat Christmas Dinner 2014, if I am fortunate!



Friday, April 11, 2014

Wanting to try and Give You an Update

Of course many of you already know about all that has taken place with myself and my husband, the accident, DC and the entire gamut of the past three weeks. What began as something so wonderful, was so abruptly ended in such a disaster.

I, nor honestly any of us really know what the hell happened out there coming into Dallas on I-45 a couple of weeks ago. There were three vehicles, 2 of which claim that "saw" it all". One man that says he "saw" from his own front porch what He thinks he saw, yet in the blink of an eye, it seems almost impossible for anyone to have just "happened" to have walked out at the exact time that something like this was taking place. It cab happen, and I understand that. But, the odds of something like that happening, and then between "hearing" and turning around to also "see", as I said odds are what you saw and/or heard were more than likely two different things.

I also know there was people that told myself and the gentleman that was at the time helping in in D.C. after all this took place, that my husband was NOT at fault. As a matter of fact, we both were told by the same "trauma" unit physician about the wreck itself, as much as they knew then, the injuries, how many and what "type" of vehicles were in involved. The details were very specific at that time, even down to all of the injuries they thought Jim had, and there was a long list. So, whomever this Doctor was (and I have his name) and also the name of the nurse who called the first time. As I said they repeated the list of injuries, the information about the accident and even went so far to say that it appeared an 18 wheel tractor-trailer that "ran into the back of our car.

Well, in the first place, lesson learned, get a lawyer immediately, if is it fairly bad accident and even if no one was injured, just get one. Secondly, do NOT wait the "10" days for a police/accident report to be "ready:". If you have to CALL three times a day every day until you have it in your hands. That bull about "10 days" was bull. My own insurance company and the others involved in the accident had much quicker than we were told it would be ready.

KEEP everything! Every note, every receipt.... parking, eating, anything... keep each & every receipt. At the time those things do not seem all that important, but that night I took a fall at the very hotel we stayed at, I kept all of my receipts from both. I did not know that I maybe needing medical attention or how badly I was injured etc. Actually I thought I just had a cut all the way through my lip and a scratch or two. Now, I am dealing with an infection and dry socket from a tooth that had to be pulled, along with now I have a chip in the tooth next to the other one, and my lower right hip/back is just giving me the blues as far as pain. Of course do I know that it is he fall? Well, speculation. But, I was not having issues with any of that until about 7 days later. Then it started acting up. Even an any kind of fall, or accident sometimes it is a week or more before all that is really wrong. So, never get up from a fall, or any type of thing such as that, and completely think oh "I'm okay"... you may think... but bruising on the inside, especially deep so nothing "feels bad, or looks bad", until it has had time to manifest itself in the right manner,

For the most part right now I wanted to let everyone know, that as lousy of a time this all is, right now we are just trying our best to put one foot in front of the other. When something such as this takes such a toll on your life... nothing I don't think every truly returns to what you thought was "normal again".
No matter whether an accident, or a chronic illness, anything that "moves" your life in such a dramatic way, forever more gives you a different vision...

I am still not near the place I am really comfortable to write about all of it. I am just trying as I said above, to keep my ducks in a row! I have several things "due" like my Mom's tax form, that I GOT to get done and in the mail by Tuesday, or file an extension...a which if I have to I will..

I also have some "brain fog" type mess happening to me... I think honestly what I need to do right now, is get off this computer, fix me some breakfast & watch a couple of movies for now. I am feeling lousy and my mind does NOT work, when I feel physically crappy... so I maybe back on today and I may not be. Also, don't panic if you happen not to see me post etc this weekend. I do have to finish those papers and get them in the mail, plus I have several other things hanging over my head I just need to get done and off my plate, When those things bothering me, I am never going to put my head back on straight. Plus whatever is going on with my lower back and hip are not helping things at all. I can barely sit HERE when I         KEEP TRYING TO FIND SOME WAY it does NOT hurt to sit. So, I am off for a bit today.... and I will sign back on and talk more once some of this stuff is off my shoulders,..












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!



Thursday, September 30, 2010

Clinical Trials on Tenazumab for Osteoarthritis pain halted by FDA because of working "too well".

http://www.msnbc.msn.com/id/34276015/vp/39428302#39428302

How stupid is this??? They find a medication that can take the pain of osteoarthritis away so well, people get their lives back, but the FDA feels it is working "too well", thus they have halted the clinical trials until they can deliberate over it. Why not put a strong warning on the medication, that if you have advanced degenerative joint disease, where the joints are almost worn out enough to require replacements, that you need to not go back to joint intensive type activities, such as jogging, running stairs, running, playing tennis, or any kind of physical activity that puts lots of added stress onto the joints??? Sure we are going to do more once we are out of chronic pain somewhat, but to take it completely out of clinical trials because it works so well seems absolutely stupid to me. One story about it is above... and here is another link...
http://www.eurekalert.org/pub_releases/2010-09/uoc--pis092810.php

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