Showing posts with label biologic medications. Show all posts
Showing posts with label biologic medications. Show all posts

Thursday, January 21, 2016

Glenn Frey of the Eagles & His Suffering from RA & The Medications and Treatments that can be almost as bad as the diseases....

Gosh How many of us discuss this daily! With RA, Lupus, and any type of autoimmune diseases, the medications themselves can cause as much havoc with our bodies as the diseases themselves. Do I ever know this one, after the double set of cellulitis on each thigh, that then turned into abscesses, that took over 7 MONTHS to finally get to the place that I am not on antibiotics, they are not debriding them weekly, and then I have had double pneumonia at least twice... I know for a fact that one of my RA biologic medications caused the cellulitis that turned into the nightmare of abscesses. After having those incised, and for weeks they were still not healing, finally I was sent to a wound care specialist at Charleton Methodist in Dallas. I have no doubt had I not went to them, I would have been in the hospital with IV antibiotics and no telling how bad of shape I could have been in... I was so terrified of the MERSA virus being a part of it, I kept seeing that those two huge holes in my thighs were turning almost a dark brown/blue in color and I feared the worst each day...although the left one finally sealed over, the abscessed again, had to be incised again, it healed just before I went to the Wound Care Place... but the right one was 7 trips for 7 weeks and it just finally sealed over about 2 weeks ago... yet the doctor released me, and said it is still healing some on the inside... each day I have to check it though to make sure it is not abscessing again. SO FAR I have been fortunate... even with the double pneumonia, Ive had it at least 3 times, once before being diagnosed with the autoimmune illnesses... and even though I probably should have went to the hospital, I stayed at home, done everything the doctors told me to do, and made it without having a hospital visit... BUT, that does not mean that it will not happen... I know now what to watch for... I had no signs of having pneumonia the last two times other than a severe headache, then I began to hallucinate, and finally figured out I was running a high fever... over 103 degrees... which sent me to Urgent Care immediately! Again, I was one of the lucky ones... but it meant no more biologics for now, they took me off the MTX, which I had been on for 5 or more years... and FINALLY after having my stalled pain pump replaced, my Rheumatologist started me on Minocyline... an antibiotic they use for RA.. BUT, I figure I will be going on Xeljanz, within 3 months... yet, the RA and Lupus are continuing to take their toll on my joints... I have an 80% compressed disc in my neck, and need surgery very soon....and I still need the lower lumbar/sacral surgery... both I know are getting worse because of the Lupus and RA... so are my hands, fingers, thumbs and wrists, that are showing signs of looking crooked...especially my thumbs which hurt so badly.... I have lost a great deal of strength and grip in my right hand, and I am right handed.... I just yesterday threw out 3 MONTHS worth of that one biologic... and it almost made me sick to pitch out medication, that probably cost thousands of dollars... but I cannot return it, I cannot do anything with it, and I do not wish to ever try that one again... not after what I have suffered through... so to see others, and then see that these diseases do not show any mercy... they effect the famous, the folks like myself, the young, the middle aged, the elderly... and can take a life so much, much earlier than should be taken... it is a crime, that until research finds a cure, a reason, a way to stop these hideous illnesses in their tracks... none of us are immune for sure... 

Wednesday, March 11, 2015

How DO You Deal with Doctor's Offices, especially the Nurses and Staff When they just REFUSE to HELP YOU get proper care

It it to the point we sometimes must question "why" our doctors, dentists, an other medical professionals get into the business of "patient care". My family has had several events over the past month, and 99 percent of it all, is due to "lack of doing their job properly"! Of course we had the horrible weather in the area for several days over a couple of weeks prior, but all of that has been behind us since last Friday at the very least. I had to make the TWO trips to Dallas, two days in a row, because my internal pain pump, although "refilled" seemed to not have been "updated" properly. Thus it was not set correctly to give the proper dose of medication and so forth. I had to drive like a bat out of heck... trying to NOT get a ticket, because they were closing early that day, and I had to have it done, due to the fact they were not going to be there from like a Friday to the following Monday. So, I through my teeth in, jumped into some jeans and a shirt and headed that way. Well, I got there within about 45 minutes. Traffic happened to have been good at the time. I told the receptionist I was there, and to let the woman that would get this resolved I was there. Well, they had a waiting room full, but they were coming and going pretty quickly. The nurse came out at least 6 times, and I was sitting in the chair RIGHT BESIDE the door to the inside offices! So, there was no way she could miss me. So, over an hour passed and they were almost ready to go to lunch! Finally the nurse comes out and says, "Gosh I didn't see you!" WE thought you had not made it yet.... duh!!! Really!? So, I go in finally, get that done, and was back on my way home... but rather than being a couple of hours, it was more like 4 since the receptionist never told the woman in the back.
So, the week before that is when we had all of the really terrible snow, ice, sleet, especially in the Dallas area. Many offices including that doctors office was closed off and on during that week, and then the next also... but I had called my medication in - giving them PLENTY of time BEFORE the weather got too bad, to send the script over to the specialty pharmacy so they could get it out in priority mail. That would have came in within a day or two at the latest. Well, I never heard back, and this was like 3 days after leaving messages both with the doctors office and the pharmacy. When I would call the doctors office, all I got was recordings. Yet, they never mentioned they were out due to weather, no one ever called any patients... they just "assumed" we as patients would either "not come in" for appts, etc. Talk about nuts!!! Some people travel several hours away to see him... and to think I go and it takes about an hour... and that is bad enough... so this was like a Wednesday. I called through Friday and never got a soul on the phone, and no one answered any of my messages. On Monday, I call, and leave word again. I had checked with the pharmacy and they had not received a script yet. Then, they were the ones who first told me that the doctors office had been closed off and on for several days, and didn't get many of the scripts out! So, I call AGAIN the following WEDNESDAY, a week later (and I was to run out of medication on that Sat/Sun BEFORE) and finally I get someone to call me, and tell me "Oh it is not your fault, we just weren't open due to the weather"... no duh? Really!!? And not one person thought to try and get a list of patients and call them... it is just nuts... It took a over a week, several phone calls later, and I finally got my medication. So, last week Jim's monthly visit and to pick up scripts was supposed to be I believe Wednesday. Well, he calls because that was the day here the weather was horrible. Snow, Ice, Sleet... both here and Dallas were no place to drive... so he tries to call them and again, no answer, no message saying a word about being open, closed, etc... nothing... it is NOW Wednesday! They promised him last Friday they would mail his scripts to us, and set his appt up for later in the month. We asked them to at least send it priority mail, and oh no they didn't want to be put out that much, and besides they had told us they would be open last Friday afternoon (they usually close on Friday at lunch and only work half a day) so we asked if we could drive up and get the scripts... well NO they were NOT going to stay open Friday afternoon after all... they changed their minds. Okay, well Jim is running out of meds, and they promise they will go out Friday, and we should get the scripts if not Saturday, by Monday at the latest. YESTERDAY!!!! Tuesday! NO SCRIPTS!!!! NaDA! He calls, and the nurse tells him, well we mailed them on Friday, but we think the mail man didn't pick them up until Saturday!!!!!!! You have got to be kidding me!? So, we shall see once again a WEEK later than this should be, actually more than that for him... but those scripts better arrive.... this is insanity.... and if they would have DONE THEIR JOB right away, like with mine... I would have had my medication right on time, no problems... and so would Jim... but it is like they just don't care! Well, if you "hate" your job, or just don't want to do it, and don't care that people can get extremely ill, wind up in the ER, suffer needless pain... for more than just a day...or more than once.... but several times.. and each time I gripe (because it is usually ONE of the nurses that pulls this and we know it) - she does it I think for spite... yet even though I had been told she was being "replaced" that was months and months ago... and she is STILL doing the same thing.... It sucks....

PLUS>>> I can guarantee you, this doctors office has all kinds of signs posted about "what they will and will NOT do" if you don't make an appt on time, or don't call in ahead to cancel, or whatever... they will charge either an entire VISIT, or they may deny you medications, until you "reschedule" AND come in for the visit. Even if you are 10 minutes LATE (usually I am on time, but I have had to call and let them know I am stuck in traffic)... and all kinds of if's, and or but.... if the "patient" does NOT comply!

What about the PATIENTS TIME?! When you go to a physician, especially out of town, that is YOUR time... you get there, you are on time, and then you sit and wait for 5 hours! I've seen it happen to us even right here at our PCP office! He would be hours late, keeping you sitting in a cold cramped room, not even have a nurse to come in and say why.... but that is supposed to be OKAY?! OUR time is just as important as their time... we also have family, jobs, other schedules and appts. in our daily lives also.... it has always been beyond me to see some of the ridiculous stuff the medical profession will state to "patients"... yet it seems we have no "recourse"... if it happens to us....

Another great example just recently for me again. I called my dentist office LAST WEEK! I wanted to make sure I had the "dollar amount" right to finish up my "mini implanted" pins for the bottom dentures. I have the "treatment plan" that was initially drawn up BY THE DENTIST HIMSELF! We in fact, due to "HIS" mistake, paid for 11 MORE TEETH at $147.00 EACH to be pulled after my dentures came in and all of the back teeth were gone! By then, I had no choice! I couldn't just walk away and say forget it. Here are my full set of dentures, that I have to have... already have paid thousands out of pocket to get this far... and yet even though HE LEFT THAT OFF THE TREATMENT PLAN - about CHARGING for EACH TOOTH left in front when my dentures came in!!! I could NOT get them to come down, to give us a break on the price... you add it up $147.00 x 11!!!! NOt Cheap and WELL ABOVE AND BEYOND what I "agreed" to when I signed that treatment plan..of course they "had me over a barrel" by then! If I went somewhere else, I am not sure any other dentist would have touched me since this other one had so far done all of the work!PLUS my new dentures were sitting there, that gosh cost (just themselves) almost $3,000.00!!! And they can't be in unless the rest of those teeth are out! So? I am stuck, whichever way I turn... thus again, they get their way...

So, before the dentures were put in and while he was pulling some of my top molars, a piece of "bone" between my maxillary sinus PASSAGE and MY MOUTH!!! I WOULD GO TO RINSE MY mouth out and WATER would pour out of my nose!!! So, I called, went in and he felt like it would "close itself" off. So, I was put on another month worth of antibiotics, and we "hoped" it would seal itself off. Now, this is also where he had to "split my gums" and then they were sewn back together, and he removed stitches 10 days later... so it was "sealed" with sutures initially.

Well, weeks went by, and nothing stopped. Same thing, between the "air" I could hear coming in and out, and the "feeling" of water from my mouth, to the sinus cavity, to my nose... it kept happening. We waited about 8 weeks, and he decided to go another procedure, to close it off. It was called a "buccal" flap (and here is a very good look at what the heck was going on and can lead to scar tissue in the sinus passage etc...

So, I went through that and believe me, he gave me "gas" BUT THAT DID NOTHING!! This was a painful scary process sitting in a dentist chair. Honestly, at that time when I think about it, he should have immediately sent me to a "true trained ORAL SURGEON)... one that could have at least given me "twilight" or something... it was nuts... But I went through it...

again stitches, and again taken out 7 to 10 days later... well guess what??? Nothing closed... EVEN WITH my new dentures in, covering it over... (now this had been like 4 months at least) and it didn't fix it..

Well, next is a "bone implant or graft".... and he was sending me to what I thought was an M.D. - a "true oral surgeon" like that can put you to sleep in an "OR" setting... I went and had my wisdom teeth cut out at 19 years old at the Baylor Dental College, and the head Oral Surgeon did my surgery.... and I was expecting to see someone like that... besides if I had gone there, my "insurance" since this was not caused by a "dental" but "physical illness - Sjogren's) may have paid for some of it...

But, he sends me to an idiot about 25 miles away, that is a crazy person. First, they told me NO CHARGE for me to come in and be seen and have a consultation. 2nd I had just had Xrays done of that area less than a week or two before showing the bone piece missing, which was about almost an inch between the maxillary sinus and my mouth.... but he insists on taking another Xray - and then charges me almost 200.00!!! too do NOTHING! HE wanted (HONEST to the Lord) to DO THE EXACT SAME THING MY DENTIST DID THAT FAILED! PLUS he knew nothing about "Sjogren's" and less about autoimmune illnesses, and he acted scared to even touch me, due to all of my "medical issues".... so again here I am STUCK... if I DON'T PAY UP, then there goes my credit score... he absolutely (and he is another one I sat waiting on him until after 5 pm in the evening, and my appt was like at 2pm).... and he could not do a damned thing to help me... PLUS he tried to go ahead and schedule the procedure.. and told me it would cost about 3,500.00!!!!!! NOPE you read that right!!! $3,500.00!!! REALLY!!!???!! You have to be joking right..?

I literally hurried paid, AND ALMOST RAN TO MY CAR... I felt like I was in the "Twilight Zone" of hell with dentists!!!!! Nuts, insane, no compassion, no care... and he is old as Methuselah... he had been a "dentist" for eons...

As I drove back home, late in the evening, my husband and family worried... I finally jumped on the cell, and told my husband I was fine, mad but on my way home....

Again though, no RECOURSE!!! Where are those PATIENT RIGHTS!!?? I sure as hell have not seen them.... and there are more, but these really stick out...

Now back to my "current" dental status. I called last FRIDAY, to get the proper charge, and make an appointment (by the way after about 6 months enough scar tissue filled that hole, and even though the bone is probably still missing, the air and any liquid seems to not be coming through... but it took it that long to seal itself over... and that is insanity... I could have and already had massive issues, with lots of maxillary scar tissue in that sinus passage. I had been told that after having a CT scan of my head and neck... they could see the chronic scarring from one sinus infection after the other when I was a bit younger.... but I could have had a massive infection, and/or all kinds of things can happen when you leave that "open" for bacteria etc to get in.... it could have even caused osteomyelitis... or a bone infection.... that URL above will give you a good look into why that was nothing to mess with....

Okay, it is NOW WEDNESDAY of the following week! The receptionist had the audacity to tell me, "Well, that plan was done almost a year ago" and prices have went up! WHAT!!??? So, she said she would talk to the "office manager" and call me back... well, here it is almost again a week later... no call... nothing...

and again, what is my recourse....???? Those mini pins HAVE to be put in because my bottom dentures WILL NOT STAY IN PLACE without them! So, they have to be "modified" to snap down onto those pins, and until that is also done, my top dentures tend to "move around" if I am not careful. Even with the "Fixodent" powder, and everything like "training" your muscles to help hold them in... if I allow my mouth to dry out in the least way, or I have a long conversation, or if something "gets under" that top denture due to the bottom one shifting around, they both will literally fall out!!

How the hell can I deal with that? Plus I am NOT able to EAT PROPERLY YET! I can't "chew" most stuff, but very little on one side... I have had to stop eating many things that are healthy and I love... many fresh fruit, veggies, just so many things that I think I "might" be able to eat, and there is no way... either the dentures move, or something happens so if they don't line up, then there is no way to chew food... I can't bite anything off. I have to even take lettuce and Jim cuts it up almost like it is chopped parsley or something tiny, just so I can have salad... but things like cucumbers... forget it, can't eat apples, no matter how small I cut them up... it is insanity....

Tuesday, February 24, 2015

Reminders of How you, A loved One, Or Someone Else you Know maybe able to get assistance with medications & other needs for Arthritis

The Arthritis Foundation has really put their website in the spotlight and now includes LOTS of great information for patients, families, caretakers, and friends or advocates. From giving you places to get help with medications, names of medications, and financial aid that may help to play a huge role in a patients welfare especially when it comes to any type of Arthritis, Rheumatoid Arthritis, Juvenile Arthritis and so forth. I wanted to list a few of the URL pages with this information on them for those of you who may not know they exist. Rather than combing through the internet and searching for possible assistance, they really have put together some wonderful lists to help with these issues.

These are but a few of the pages from their site that can help in so many ways. Be sure to check out all of the different pages, information, how you can help yourself, a caretaker, family, friends, ... from medications, to healthy eating, exercising, doctors, tests, and more... this site really has a huge amount of great information for everyone.

Drug Specific Medical Care above - like help from Pharmaceutical companies.

Above can be actually getting the medications needed from the Pharmaceutical companies, or help with a high co-pay and so forth.

Above is another list of places that you may find financial aid for medications, or possibly to see doctors, and other types of assistance.

Above you will find some state agencies and/or local & even possibly Federal assistance for paying for your Medicare Part B and/or a reduction in the cost you pay for co-pays on prescriptions.

Above you can go to this URL and find the names and information on the medications themselves for arthritis and arthritis related illnesses.

Above is where you can find out about lab work you may have done, and what some of those tests are for, and what some of them might be in order to understand more about what the physicians are looking for when they do lab work.

Above this link takes you to where you can find out more on arthritis, symptoms, how it effects your other body parts, other illnesses that can often be related to arthritis, and how you can help to keep your own body more healthy. Lots of tips on the site for everything, from eating well, to the proper types of exercise, and how to do what you can to help yourself maintain a "quality of life".

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....

Saturday, October 4, 2014

Rheumatoid Arthritis Study - Volunteers Needed - See if you Qualify from this post and the IFAA will get the donation!

Do YOU qualify for this study? If you do, and are willing to give a little time for a phone interview, you can raise $100 for IFAA!

All money raised from this study will be used towards wellness education and patient-centered/patient-led research in 2015.

Do you qualify? Will you help? PLEASE SHARE via social media to find qualified participants.

Additional qualifying criteria is:

You must have been on the Cimzia, Humira or Remicade for less than one year before discontinuing.

You must have moderate or severe RA (as opposed to mild)

You cannot be a nurse, doctor, or research professional.

This will be one confidential and anonymous phone call with one moderator that will be scheduled at your convenience.

Is this you? If so, PLEASE EMAIL DOUG ASAP at!