Showing posts with label Pharmacists. Show all posts
Showing posts with label Pharmacists. Show all posts

Friday, July 16, 2021

How Chronic Pain Can Lead to Autoimmunity Problems — Pain News Network

How Chronic Pain Can Lead to Autoimmunity Problems — Pain News Network: By Forest Tennant, PNN Columnist Every chronic pain patient must know and understand autoimmunity and how to combat it. Research on chronic pain has unequivocally determined that the chronic inflammation and tissue destruction caused by a painful disease or injury will produce autoimmunity. ...

and my notes about this also  ...  Goes to prove just how SERIOUS Chronic Pain that is not treated properly due to those pharmacists or physicians due to nw not wanting t prescribe the right medications and/or in the correct amounts for chronic pain patients. I feel even my own pain physician, a superior specialist in this field that I have been seeing now for well over 13 years, he put in my pain pump & has treated me all these years without any issues. Suddenly, over the past year he began to shy away from one of my meds after he was giving it to me monthly for all that time, I now have to continually "remind" them to get the prescription to me, & this last time, the "woman" who I did not know, (I called the regular lady I've talked to for all these years at her personal ext. and get a phone call back from someone I did not know who talked to me likeI was someone who was trying to "abuse" meds... it is infuriating for her to even know some of my medical issues that were none of her business. She began to speak to me as if she was my doctor! I am still furious. Those are the things more and more chronic pain patients are having to put up with even with a doctor who has treated them for years and/or the same pharmacist! It needs to be put to a halt & the "real" issues of "fake medications" are being made in Mexico and shipped over here under the names of real prescriptions here causing severe issues. there are people that have are in s much pain that suddenly get treated like this, lose their doctors, or the doctors quit treating them as always & they get so depressed they have been known to commit suicide, although that is hard to say it's true. - Here is an article by the "Pain News Network" that tells some of our story. I have lived with "chronic pain" since I was 17 years old when I suddenly even before my 1st child was born in 19799 having severe migraines. I have fought tooth and nail through every type of doctor, through every type of tests some of them multiple times, been treated like I was an "addict" & at now over 55 years old, still continue to have t at time "fight" for my own right to proper treatment.



Friday, March 10, 2017

A LESSON FOR ALL - NEVER BE AFRAID TO SPEAK UP TO YOUR DOCTORS, PHARMACISTS, NURSES, & MEDICAL PROFESSIONALS!

Taking your own medical knowledge about yourself in your own hands can save you money, time, hassle, and maybe even your LIFE!


Here is my own story:

I think we should FIRE all of the "meteorologists" when it comes to their weather "forecasts"! For two days, the forecast was thunderstorms both yesterday and today... 70 to 80% chance! I had a doctors appt in Dallas yesterday afternoon, and I was concerned since I HAD to go to this one, that I would be in bad weather with BAD drivers, when it comes to Dallas traffic... well, then they forecast that the "thunderstorms" would hold off till "early Friday morning" thus although it looked horrible in the skies over Dallas yesterday, no rain etc really happened. Then I get up this morning to NO thunderstorms in the night, but HIGH HUMIDITY THAT FEELS LIKE A SAUNA OUTSIDE ALREADY! My lawn looks as if we had 4 inches of rain everything is so wet from the humidity! Now today the chances of thunderstorms is just about gone, and a small % of rain maybe. Well, I could have told them days ago, we would NOT have thunderstorms, but we WOULD HAVE HORRIBLE HUMIDITY, along with the Barometric pressure being nuts! MANY of us with "joint problems, back problems, neck, have had joint replacements, have arthritis, and RA, or any type of chronic pain problem, could have gave a better forecast from the way our bodies "feel" than they can watching their radars! LOL!

 I spoke with 3 ladies at my doctors office yesterday, and all 3 said the same thing just about I did about the weather, and how it effects them. Then, I was in for my pain pump to be refilled. So, I go in and he was running about on time, which I was happy about, because my appt was at 2:30PM, and I wanted out of Dallas hopefully BEFORE rush hour... so he finishes up, and he upped my pump and upped me to 5 boluses a day rather than 4 since the hip issues, have caused me to have to delay my neck surgery, back surgery etc... plus now with the hip being repaired and not replaced, (which I wonder why he did not just replace it. Due to me having severe osteoporosis, the "normal" would be to replace it. Now I have a very high chance of having to have it replaced down the road simply because of the RA, Lupus and Osteoporosis) but anyway, now I have more pain up and down that leg, mostly related to my lower lumbar and sacral spine issues that were tweaked, along with my ankle, and my neck when I fell. I did not have that much problem with my back and neck, and the ankle until after the hip was better, then the others began to show themselves. Because I was in so much horrid pain with the fractures of my hip, the others were not as "painful" at the time. Now with the hip repaired, the ankle, my neck and lower back pain have become worse. 

Anyway, he finishes refilling it, and does his thing with the wireless device that "talks" to the pump, but he told me my next "refill date was like in October"! I said that cannot be right! With upping my meds there is no way I would go that many months before needing a refill. So, as he was walking out of the room, I used my own device that "reads" the pump, gives me the information and also allows me to give myself the boluses when they are due... and he had done my "bolus" amount wrong again. It should be 1.15 now for 5 times a day... but he put in .1150 which is a HUGE DIFFERENCE FROM 1.115! Thus the difference... So, I stepped in the hallway and was asking the nurse to have him come back, that I thought there was a problem, and sure enough... he put the decimal in the wrong position. Now my next refill is on June 20th or something like that in June! Which MAKES SENSE! LOL! So, just another NOTE for each of you/. DO NOT BE FRIGHTENED TO QUESTION YOUR DOCTORS OR PHARMACISTS, NURSES ETC... if you FEEL THEIR IS A MISTAKE OR SOMETHING WRONG, SAY SO! It can save you lots of hassle, or may even save your life! Don't feel those like doctors are "God" because they are humans, they do make mistakes... especially with a high number of patients they see now, and all they have to contend with, STOP and speak UP if you feel something is NOT RIGHT!!!!!

Sunday, March 27, 2016

Chronic Pain, the CDC, Doctors and the "view" that seems to be blurred by being much too "one-sided"....

 I still will always believe that the CDC and others are presenting this "abuse" and Overdose situation FAR MORE ridiculous as it really is. Those that are going to ABUSE these medications, are going to get them, whether through doctors or any other way they can... it is just the nature of the abuse situation, whether it be legal meds, or illegal drugs... I also know that I totally understand being "cautious" and doctors needing to educate patients, and keep a close eye on them, when they are on strong pain medications. Those patients and their families need to know and understand what to look for as far as an overdose, or what to look for when that patient is NOT getting ENOUGH medication... because not getting "enough" out of pain, is just as bad as overdosing... you remain NOT able to function if your pain level is too high. 

And "NO" NO type of pain treatment will ever remove ALL of the pain in chronic pain illnesses, BUT it will do what it is designed for if you use it properly and that is get the pain to a "tolerable" level, where you can function most of the time pretty well. When my pain level is so bad, that I am literally sitting in my floor crying and screaming and just wanting the pain to end, then for some reason something is wrong. Either my meds are not working correctly, I need a dose adjustment, or possibly I have a new illness or something such as a new ruptured disc in my neck or back, or new nerve pain etc... and if I go to the proper physician which I always do, they can either send me for treatment or surgery, and/or adjust my medications to once again get me to a place I can tolerate that pain. 

There is always SO MUCH BAD PUBLICITY when it comes to OVERDOSES, kids getting hold of medications, "quack doctors" who prescribe whatever just to make money, and so on... BUT HOW MANY TIMES DO YOU SEE THE NEWS STORIES ABOUT HOW GREAT A LIFE IS ONCE SOMEONE IS ON PROPER TREATMENTS FROM CHRONIC PAIN AND HOW MUCH BETTER THEY ARE ABLE TO COPE AND HAVE A SOMEWHAT NORMAL LIFE???? RARELY! Our society as a whole has become so ENGROSSED IN THE BAD STUFF IN THE NEWS, THAT the GOOD things are never printed, talked about, or put up for public awareness... thus the public has no idea HOW MANY PEOPLE ARE TRULY AND GENUINELY HELPED BY THEIR PAIN MEDS... That is the issue, WE WATCH ABOUT WAR, AND TERRORISM, AND MASS MURDERS, AND ALL OF TRUMPS CRAP, AND THRIVE ON BULL, DISGRACE, AND the MORBID THINGS in this world, 

YET NOT LOOK OR EVEN HEAR OF THE THINGS THAT ARE MAKING A TRUE DIFFERENCE... the truly dedicated professionals who DO GOOD, and are GREAT PAIN DOCTORS, AND they DO treat their patients in all ways to help them... and if that means opioid pain medications then they do those, but they also monitor that patient... I take urine tests, go into the office usually at least every 3 months, depending on when the pain pump needs to be refilled, and I "abide" by the guidelines that my doctors ALL give me... I also let ALL OF MY DOCTORS, know exactly what medications I take, who prescribes them and why, and make sure every physician is on the "same page".... and I know many patients that also follow those rules, yet of course there are those that do not... but those patients are not as "prominent" as the patients like myself that "do the correct thing" and make sure they lock their medications up, they keep their doses where the doctors tell them, they do NOT run out of medications early, they keep up the time and dosage of their meds, they research themselves how each medication can effect another... for instance I did not know why I was not really supposed to drink "Grapefruit juice" and I love it... and I still eat a half a grapefruit here and there, but that is different than drinking the juice... because that juice can either cause some medications to be "stronger" or "weaker" in the body, due to the chemical makeup of the medications along with the acid and other things you get in the juice....

I FEEL ALSO ALL PATIENTS NEED TO EDUCATE THEMSELVES about ALL MEDS, INCLUDING pain meds.... OUR DOCTORS ARE OVERWHELMED AND STRESSED ALSO, so even though they SHOULD MAKE SURE WE KNOW CERTAIN THINGS, at times something may slip through the crack, and they forget or don't know to tell you... and even with our pharmacists, they usually point out certain things, but even they are overworked and overloaded with getting scripts ready for thousands of patients.... and with the internet at almost everyone's tip of their fingers, WE, should take responsibility to look up information, do research and also ALWAYS TAKE A LIST OF QUESTIONS TO YOUR DOCTORS VISITS! I NEVER go TO THE DOCTOR WITHOUT A LIST, some either new symptoms, questions, and so forth... because without that "yellow" padded piece of paper, as soon as my physician walks in that door, I would forget half of what I intended to ask him... so we have to also TAKE RESPONSIBILITY for our own bodies, listen to them, and believe me, I WILL ARGUE WITH A DOCTOR, if I FEEL something is "not right"... and more often than not I AM RIGHT! So, even if they get upset with you STAY WITH YOUR GUT FEELINGS until you are satisfied with the answers your physicians give you... a prime example is my pain pump.....

I HAVE KNOWN IT IS NOT SET CORRECTLY... I have had too much pain that should not be there since the new pump was put in, and I knew I would have to be bumped up a couple of times, but when I went in this last time, whatever happened something is very wrong. I am NOT getting nearly the proper amount of medication as I was with the first pump, and I know by how I feel, and what my PTM tells me, and even what my doctor told me in the office, my medications are not at the proper level. So, I am having issues with pain, and other things due to that pump not set correctly. I go in on Tuesday, and I intend on getting it upped properly, AND FROM NOW ON A PRINTOUT, of ALL OF THE SETTINGS! They used to give me a printout, so I could know exactly how it was set, when, what doses, etc... but they got a bit lax in giving them to me, and I got lax in asking for them... well I will walk out with a printout this time, and from now on... because that printout had helped on at least 3 occasions to "get my pump correctly set".... so it is imperative I come home with that information from now on.... 

I am sorry for the LONG post, but this is such an important issue for me and so many others, we must stand arm in arm, side by side, and make sure we the PATIENTS get the PROPER treatments we need in order to have a better quality of life...A great example is that due to my pump not being set right, and I have not had the cervical neck surgery yet, I cannot set and type very long... and rec ently my Mom began to have all types of pain with her lumbar spine, and she has several problems there that at 82 years old, and her other health issues, they really do not want to even discuss surgery... it make only makes things worse... so she is now on pain medications... at first we had her on NSAIDS but her kidney functions went haywire so she can no longer take ANY type of NSAIDS... so my pain doctor put her on a small dose of a pain medication and she had injections a few months back... well the pain is so bad now, she won't even get out of bed until noon many days... and she now understands what I go through... yet she is not able to "push" through the pain yet, because her medication needs to be either adjusted or changed to something a bit stronger... so her quality of life is nothing right now and quite frankly I fear if we don't get it more under control, she will just give up and throw in the towel.... so something has to be done to make her feel better and have less pain.....

Friday, January 9, 2015

An Article About Chronic Pain - How Horrible weather can be on those with chronic pain, joint problems, and chronic illnesses that effect joints, bones, and more

Great Article about "chronic pain" especially joint pain and the weather. I know for myself, that like yesterday, the very sudden huge drop in temp - from about 50 to 18 degrees yesterday a.m. sent me into one of the worst days of my life with pain. Ironically we were going to my pain doctor, BUT he was seeing Jim yesterday, not me. I wanted so badly to tell him that I could sit in the floor and scream, I hurt so badly, but I knew the appointment was not "about me", thus he knew by looking at me I was hurting... anyway, I had a headache that is one of the worst I've ever had even from years back with my migraines, and NOTHING would stop it. Believe me I tried everything I could think of. Then my neck was so stiff I could literally NOT turn my head to see over my shoulders while driving. I had to turn my whole body and use mirror. Then my lower back hurt so much, I honestly thought I had kidney stones. And my legs, ankles, feet, wrists, and my thumbs were so terribly bad, I felt they were stiff, and just was not able to move them without horrid pain. Now, the weather I KNOW "in my bones" (no pun intended) has effected me for years and years. Even when I would have migraines in my 20's and 30's the dramatic weather change could bring them on almost every time. No one quite believed me, and then when I began to see my Orthopedic Surgeon and he did all of the joint replacement and surgeries on me, he totally agreed the weather would absolutely effect pain, especially joint pain. Even the "phantom" knee pain I get with my knees, that seems like I never even had them replaced will come on with a vengeance when we experience storms and so forth. So, let not anyone make you think you are crazy, when your pain is worse in weather fluctuations. I think it is definitely so. Yesterday was living proof for me. But, I am also hurting today, so far not quite as badly as yesterday, but I can tell if i were to get up and really start moving around I would be in a world of hurt... which sucks. Because I have to get out today cold, bitter weather or not, and pick up scripts both of us have had filled. The visit with my pain doctor for Jim went well yesterday. Finally someone that will work with him. But of course this is ALL coming out of our pockets, and everyone knows office visits and medications are NOT cheap. I dread picking his up, and then this is my first time having anything filled since I had the new insurance start on the 1st. So, I hope the hell I don't have major issues with United Health and my MAP... I will be so pissed if I start having hell getting meds etc paid for. That is why I dreaded the change from Humana so much and just put it off the last two years. But, more and more of my physicians were dropping Humana, even my PCP, thus I decided to change over to United Health... is it a "Secure Horizons" AARP endorsed Medicare Advantage Plan. This one hopefully will not be too difficult, because I am already established and have been for years with all of my physicians. So, they assured me since I've been on the meds, and have been seeing these doctors for years things should go fairly smoothly with the transition. I will believe it, when I go today and try to pick up the scripts.....


Talking About "Good RX" card for prescriptions.... 

http://www.goodrx.com/

I can guarantee ALL of you that either do not have insurance for prescriptions, or need an extra amount off of your meds... I have used this twice for Jim's meds since we have NO coverage for him, and the meds even though "generic" are ALL expensive. There is no way we could pay full price on them. Well, I got hold of this URL and found "GoodRX" through a Google search. I can say that it is TOTALLY worth using. You can use it in just about any pharmacy... all of our local pharmacies take it and you get a better discount in some than others. But, you can look up all of the prices at different locations right on their website, so you know just about the cost before you even go to try and have them filled. We have well over 200.00 or possibly more in costs for 4 of his scripts and 3 of them came out to 69.00 rather than 150.00 or more. You can either just pull the coupons or copy of the card online and print it and they will also send you a regular card if you wish and request it. Unlike some of the ones that save you a bit here and there, this one truly so far has been a life saver for us. Between having to fork out the cash for a damned expensive pain doctor in which he has to go MONTHLY... and then medications that even in generic can be out of the bounds of reasons, I have been as pleased as it is possible to be pleased when having to spit out money you really don't have. But, there is not much choice... we either pay for it out of our pockets, or he just does not go, and does not have any meds either... so neither are very good - so you choose the lesser of the both evils, as my doctor has said about prednisone... I can either "take it" and it help with the horrid pain and symptoms of these autoimmune diseases and then know I will also have to contend with the crappy side effects, OR I can NOT take the prednisone and then suffer like hell... so it is the "lesser" of two evils.... anyway, this has been 2 days from mortal hell... actually all week dammit... Mom's phone is out and I've had to put in two work orders, then I took her a cell phone, that of course she has hell using... and I found the problem, it is an almost complete break in a line outside that is weather cracked, and worn almost through... and then they tried to do an "automated" call and ask if she was satisfied with the service... HELL what service???? They had not fixed a thing when I was there yesterday or today yet... anyway, then of course the weather sucks big time here... it is bitter COLD, and going to be several days along with the possibility of sleet etc... not a good thing for no driving idiots here... then Jim doctors appt and the meds thing... THEN I GO to MY pharmacy (this is after calling and emailing) them my new insurance information. Then I even TOOK THE CARD BY YESTERDAY! and they said they would "rerun" everything through. I go in today expecting issues for some reason and of course 3 SCRIPTS NOT RAN THROUGH THE NEW INSURANCE! SO, THEY are trying to collect 44.00!!! rather than 7.30!!! So, I had to wait for them to do what I had already told them about 4 times in the past 2 days! I get home and another script I had called in this morning, they STILL tried after I had been there TO RUN IT through the old insurance!!! OMG!!! I was livid.... and then I had to run errands, pick up stuff as far as for a couple of days just in case the weather gets really ugly.... and I ruined my entire day, almost yesterday and today... running around like a chicken with its head cut off with errands and crap. So, it got me off track with my writing and ALL I WANTED to accomplish over this past couple of days. I swear if anything tries to get in my way this weekend to keep me from doing WHAT I intend on doing, I am going to scream very loudly... plus since the weather changed I hurt so badly it is a scale WAY OVER 10!!! More like 17 .... everything on me hurts... I have actually thought that I was coming down with something else... the pain is unbearable even with my meds.... it sucks and now honestly, I am thinking the Orencia is NOT helping the RA at all... I hate to say that, but I think I am going to have to face the fact, that it may not be "the one" for me... and I hate that... the very last thing I want to do is try yet another biologic! Every time it is like starting all over again.... and it sucks... and many of you know that....

Wednesday, January 7, 2015

Anticipating the 2015 Arthritis Foundation Annual "Summit on the Hill"!

A dear friend of mine that I met in fact at last years Annual Summit on the Hill by the Arthritis Foundation had posted and asked me if I had filled out my "Travel Award". Well, yes I have, and as I told her, I had made "Platinum Ambassador" thus I believed it was my "obligation" to come to the Summit. Of course I would try to go whether I had made that or not. My entire world evolved around that Summit last year in March. I had in fact "won" a Travel Award, after putting my application in at the very last moment. I felt I had probably missed out since I was so late in even knowing about being able to go by getting a "Travel Award". So, by the time I filled out my paperwork and emailed it in, I feared I would be too late. But, within a few days, I received a "glowing email" that I had in fact been granted a Travel Award to D.C. for the Summit that took place and does take place each year around the 24th through about the 26th of March. I will never forget how much I got out of the Summit even being my very first time there, and just how much more I wanted to be a "better voice"... activist, advocate, blogger, writer, and then I wanted of course to be an Ambassador for the AF. I was not sure I would be able to get enough advocacy work in to make "Platinum" especially after my husbands accident, but I was SURE I would give it all I could in between everything that took place for those months following that fateful day in March. I've played it over and over in my mind. I have spoken about it numerous times online, and in person. I've written about it, blogged about it, and still to this day, at times it feels almost surreal.
It is almost impossible to believe all that happened at that time did. What is more impossible to believe is that the entire ordeal with the wreck that Jim went through, the months of hospital and rehab after that, and then months of outpatient rehab, the red tape that still goes on and on with the lawyer, and all of the fighting we have done to get him into physicians etc... it is truly a night mare. Maybe that is truly why I have night terrors almost every night of my life. There are not many nights that I don't wake up and I cannot breathe. I am "suffocating" in one way or the other in the night terror, but I am also in real life having massive problems breathing. Most nights I am up, trying half asleep, half awake and still almost in a dream like state trying to find my inhaler and the nasal spray, so I can once again breathe. It is crazy insane, but it is so very, very true.

I've done a good bit of research on night terrors, and of course the amount of stress from the accident in itself is enough to send me into a frenzy. When you add in my own health problems, and the fact that I have had to endure a great deal of my own pain once again, and the entire situation with my teeth, or no teeth now, the full set of dentures... of which the bottoms STILL will NOT stay in place, thus I am still not eating as I should, and by the end of the day, I just want to take the damned things out and throw them across the lawn into the street and say to hell with all of it. Of course the issue of also having "complications" which for me, what is new, yet they always seem to surprise me... of which involves my sinus cavity on the right side... and it is the maxillary sinus passage, which I have already been told, that I need to have repaired, I am sure has sometimes a great deal of reasoning behind my night mare like breathing problems. But, when you are facing another 7,000.00 PLUS out of pocket since you can't get a damned dental plan worth a flip, OR as this should be paid by regular Health Insurance, because a "chronic HEALTH Illness" is what caused me to lose my teeth in the first place should pay a portion of it. But, I have fought "tooth and nail" (no pun intended)... and I have just gotten way too weary to fight them anymore about paying any of it. Of course now, I changed insurance on January 1, thus you can believe that makes it entirely impossible to get either one of them to pay a dime ....

There is "after the fact of me already being out thousands" a "non-profit" that is for dental issues, mainly caused from autoimmune illnesses or cancer patients. But, there are way too many people needing the help versus the dentists and oral surgeons that will try and help out of generosity and not expecting either to have lots of people that will help.

Baylor dental college in Dallas also has certain things students do, while the professors and doctors watch, but you will much pay like 278.00 just to walk in the door. Then the 78.00 is a "fee" non-refundable, and the 200.00 is to apply towards care you are given, or if they can't help you then you get the 200.00 back. I know I went there to have my 4 wisdom teeth cut out all at once. In fact I was newly married, and my Dad drove me up there and home. I looked like a chipmunk with a full mouth of acorns for over a week. But, they charged a great deal less that having that done in a regular oral surgeons office.

As I leave behind so much "sadness" and "darkness" from 2014, I am trying my best to hold onto 2015 being a positive year, full of prosperity, not just financially, but more in the "domain" if you will, of getting things accomplished. I am trying to stay as far away as I can of thinking about all that took place in 2014, trying to look as each day a new one, that can mean much more as far as my writing, my advocacy, my activism, not only online, through my blog and writing, but I hope to be more involved in trying to find a way for my entire community of Ennis and Ellis County to become knowledgeable about the Autoimmune Illnesses, their symptoms, their lack of being able to be diagnosed, and to educate those that are surrounding me day in and day out right here, even as next door neighbors. I've come to see as of late, that there are MANY people that have some type of AI disease, FM, CFS/ME, Chronic Pain, right here that I could help, if given some assistance on how to go about starting an "awareness campaign" locally. We are SO LACKING in the understanding of Lupus, RA, Sjogren's (boy this one we REALLY NEED some understanding on), and MS... Raynaud's, Diabetes 2, autoimmune arthritis, autoimmune psoriatic arthritis... and the list goes on and on.

In fact, just about the time I was finally "diagnosed" with first MTCD & UCTD.. that turned into RA, Lupus, and the Sjogren's and Raynaud's was showing immediately when the MCTD first became the "name" of what was going on with me. There were two gentlemen (which is rare in the first place for men to have AI illnesses) both of them around the same age, both going to the church we were going to at that time, and both had Grave's Disease. What makes it even more unusual is men for the most part don't have "thyroid" issues either. Usually women have more of a propensity to have any or all of these illnesses and disorders.

So, right there being in a Church, with two guys, both almost the same age, both having Grave's disease was enough for me to absolutely know we had a much larger group of people with autoimmune illnesses. Both of then underwent treatment and both were "cured"... put into remission. My understanding is that once Grave's disease is in remission, that is permanent. Unlike many of the other AI illnesses, they "can" go into remission, but more than likely you will undergo swings of "active" disease symptoms, and then inactivity, yet there are no real "cures" for any of them.

That is why for me, I really would like to find a way, with the help of some of our community leaders, to get a group, or some type of monthly, weekly, however... crowd in a "face to face" type of environment to help them further their knowledge about their own, friends, or loved ones AI illnesses. I also would love to help people and physicians in "learning" how to talk about these diseases, along with how to talk about medications, side effects, long term "goals" or what to expect from having an AI or more than one, and what that will do in the years to come. Will more medication be needed, will hopefully there be more research, and possibly medications coming out? All of the questions that either patients themselves feel it is "wrong" to ask, or for the doctors who honestly are not as well versed on these illnesses, and how they address them to their patients. This includes all medical staff. From the person who answers the phone, to the nurses, lab techs, doctors, and other staff ALL of them need to be very well versed in these dreadful illnesses. For one thing, you maybe "well" and feel fit as a fiddle one moment, and within hours be severely ill and need hospitalization. Often times there is not a "warning" of impending AI and their flares. They can come on within moments, and you don't even know what hit you until it has. Unlike the flu, a cold, and other illnesses where you can certain "symptoms" like a forewarning of being ill, AI's can "attack" at any time they please.

So, when I call my PCP, and the girl that answers the phone is either not aware of my patient status OR she may not know about a "flare" of Lupus... she may insist that I "come in" and be seen. Well, sometimes that is a necessary... but at times, depending on my symptoms, my doctor may allow me to fore go the trip to the office for a visit, and just come in for a corticosteroid injection and a script for a high dose tapering down 14 days round of Prednisone.

Well, as I said, if the woman that answers that phone is "new", and so forth, I may have to make an uncalled for trip to sit in that office, to get the exact same thing I asked for. So, I've exposed myself to other illnesses, especially in the Winter. I've also wasted the doctors time, my time, and caused some other patient who truly may need to have been seen, to wait for a day. So, it is truly unjust for everyone. But, if whom answers the phone either knows me well enough, OR they understand the workings of come of these diseases, he or she may already be on top writing a note, taking down the information so they can talk to the doctor BEFORE making me come in for a totally uncalled for trip.

So, there are many involved in all types of health care that should be very "up" on autoimmune illnesses, diseases, symptoms, medications, and all that wrapping them up in neat newspaper, with a bow around it.

The very latest of challenges that many of us have had to hop over, or will trail and error finally get something nailed into the heads of the medical professionals, far and wide.

Interestingly enough, the UK tends to be "up" on the latest and greatest when it comes to being the leader in new medications, clinical trials, and finding out more than just about anyone around the globe. Often times I've noticed that Britain may have a "pilot" medication in the works. As soon as it is approved by the Brit's, you can bet the USA will be setting for us to jump up, and get to scrambling together researchers, grants and funding, clinical trials, and all on the band wago. What happens often times with a situation such as that. If the "CDC" of Britain signs off on a new medication, it means that the "medication" we put into the hands of researchers here that is basically the same, may not have to cost as much and those types of medications and treatments are sometimes able to be "fast tracked" into production. So, that is great for our economy, great for the Pharmaceutical companies, patients, doctors and so forth, because it gets here, and gets the door, helping to ultimately save lives...which ALL are great events when it comes to those with chronic autoimmune, incurable. painful, night mare diseases.

As 2015 "rolls in", I am hoping it allows me to try and "roll on through" with this blog, with the Ambassador (Platinum) work, and all of the other activist activities I so want to participate in.

Wish me luck as I am preparing to once again try to write the "Ultimate Book"... and get it published. I am also working on the more "fun" book, that will include many of the TX "sayings"... different words and how they tend to have different meanings in the South and in TX.. and many of the what some might call "odd" traditions we engage in here... in the Lone Star State!

Working on a back ground graphic for the top of my Facebook page. I want to include the URL back to here. Often people may not bookmark a page, or like even though I post a "link" back to my blog in the posts, it may get moved down several slots, and then people may not be aware of how to get back to my blog...











Thursday, February 13, 2014

Trying to Absorb Everything that seems to be "bouncing" my way...or getting run over?



Now I am sure you are wondering what the hell I have put this up for. Unless you've been to my FB page, or have seen the latest "venture" that the IFAA (International Foundation For Autoimmune Arthritis), about now you are scratching your head figuring what else I could possibly have my fingers involved in now.


Well, the story began when I "found" Tiffany the Founder and CEO of what came from a bracelet, made with a bit of leather, a belt buckle, and was a "movement" until now they stand proud and tall as one the instrumental foundations of Patient Centered Research in Autoimmune Arthritic Illnesses. So, what does that mean to me, and then of course what does that mean to yourself? That is a very long answer that shall become clarified in the days to come, and in my book to come also. A portion of my book, will be about my relatively "short time" I've been with a Foundation, that I have watched make almost impossible changes in the way others, including doctors, researchers, patients, and people from around the globe sit up, take notice, and SEE the REAL issues that "we" the patients deal with daily.

None of our lives are "daily".... or the events in them are not for sure. We may get up in the morning, much more slowly than anyone else, "walk" some of the stiffness out. Next may come a cup of coffee, that it takes all of your energy in both hands to pour it in a cup. I've not truly been able to get a "grip" on the entire next few months coming up and all that is involved, until last night. 

After I have spent the last 6 days at least arguing over insurance, my biologic medication, the infusion center, driving my doctors office crazy, along with myself, it hit me square in the face, that in 6 WEEKS I will be going to Washington DC! Here I have been wanting to do this all my life. It has been a dream, for me to stand in front of the White House, hopefully not speaking to just myself, but someone even if people just coming to be those to take a look at the White House and happen to "hear" my story. So long, I've thought about what I would say, how I would say it, and what I would want to get across to the officials in those buildings. It is almost like trying to reach the "Pope" or a movie star, or anyone that is in any type of place of "authority". Your chances of really getting to even shake their hand might be slim to none. Much less get their attention long enough to gripe about your illness, what the government is NOT doing to help it, and what they are DOING WRONG to make it worse! My thought has been unless you have lots of money to "slide" under the door of any one of our local, state or federal officials, you might as well, jump in the back of a truck, while it goes 30 miles an hour, down a dirt road and spit... And when the spit lands back on you mixed with dirt... that is just about how much you would get while the officials in Congress scrape you off of them like they scrape mud off their shoes. 

This from here down was written this morning... I am have a very difficult time between what I feel are flares of RA/Lupus, and way overly stressed... I am a total mess, mentally, physically and emotionally... I am wondering why I even try anymore... it always turns out to be a mess for me, rather than a help.... thus the reasoning behind this post.. (I also began posting the bottom portion of this on FB and changed my mind. I decided to post it here, and just put a link in to FB...


LOL!!!! I have been seeing the new "T-Shirt" on their Foundation's Website and wondered about it. When I was filling out the registration yesterday at the end it asked for your "T-Shirt" size! That is when I got the hint we would be receiving one! Honestly, over the past week I've been really struggling with all of this. I have actually began a blog post that I am still working on about my own internal, some physical, but more "mental" revelations about how quickly all of the things that are happening in my life right now are coming on me so very fast! Much of it "good" things, but entangled in the "good" are some challenges that I am definitely struggling with. I have just taken an immense "slide down through the rocky side" of my "mountain" of autoimmune illnesses right at this moment. Since I've not gotten the Rituxan infusions as I should have weeks ago, all of my RA symptoms have hit me like I just ran into a brick wall. I know I am in not only a RA flare of sorts due to the part where the bottoms of my feet hurt, especially when I first wake up and try to put my feet on the floor, to the stiffness and pain in my toes, thumbs, ankles and fingers, which is making trying to type a nightmare. it is not that it is so much "pain", I do have that, but it affects my "ability" to type. I hit wrong keys, I am constantly correcting myself, or having to back up because I've spelled something incorrectly as I typed it, and so on. Then it the "mental" true "brain fog" that this time has me terribly aware that these illnesses are takng their toll on my body in several ways. My ability to type issues are also because of the fog. I tend to try and spell words, or type normal, everyday words, and cannot remember them, and have to stop and think about what I am trying to say, or again due to the stiffness it seems my fingers are constantly on the wrong keys. And I am at the moment "brain and physically "fatigued". I feel as if I have mentally been in a prize fight. It is just almost painful to think. I want to just scream I can't take anymore!!!!!! I AM SO UPSET about NOT GETTING MY RITUXAN, that I could scream! It is one of the most frustrating situations for me. That is the ONE biologic, that has "worked" more for me than any of the others. There is just so much going on right now I feel like I am on a spinning top, and each day it goes faster and faster. I am battling the insurance even over just getting the Enbrel. I found out it is the ONE biologic of TWO that Humana will pay for. Yet, I still have to Jump through every hoop you can name to even be on that. I even got the prior authorization myself and faxed it to my doctors office myself to make sure they had it. And now I've called the "specialty pharmacy" two days in a row, they see the script and yesterday the woman on the phone says, "well, it appears maybe they got the "prior authorization form" but they are requesting "more" information from your doctor??? What the hell more information do they need? I've been going in this circle with them now for at least 4 years and each year it gets worse, rather than better. When I first began all of this autoimmune illnesses whirlwind, Humana, rarely questioned anything. For the most part, even all the surgeries I went through even 8 in ONE YEAR, there was no hassle. Many of them were performed and the insurance never even need a "prior" request on those. Then it began about two years ago. I began to notice my doctors would try to send me to a specialist, and the specialist would not be a "preferred provider"... and I had not had that before. Then they would "piss and moan" over certain medications with these "prior authorization" forms... not many but a few ... year before last, it was SO BAD that the first part of the year January and February, they made me get a "PA"(Prior authorization" on JUST ABOUT every medication I had been on for 5 years!!!! Heart med, Muscle spasm meds, you name it, they wanted this "PA" form for it. I argued with them and the answer I ALWAYS RECEIVED FROM THE INSURANCE WAS "it it MEDICARE(the government) MADE ALL THESE CHANGES" thus "they" the insurance company HAD TO request these even on medications for my heart, blood pressure, stomach and so on. That was the most asinine thing I had ever heard of. I spent hours and hours and untold hours getting that nonsense stopped! My doctors of course were all annoyed, and I don't blame them! They "put a patient" with high blood pressure, or stomach issues on medications, they are on them for years, then all of a sudden here comes the very insurance that paid for them asking for the doctor to fill out forms? In the first place the doctors do NOT have time for this. In the 2nd place it as ridiculous! Well, all of that finally went away I think. Come last year I noticed ONLY if it was a medication that was new to the patient and for the most part a "specialty" med they would then request a "PA" form. Yet, even then, the doctor filled it out, faxed it in, and I had my medicine quickly, there was no wait, there was no 72 hour "review"... and I certainly did not HAVE to wait 10 DAYS or more for my "prescription" to be processed once all of the other stupid paperwork was done!!! To add insult to injury, then, me not really realizing that Humana WILL NOT PAY for any "specialty" biologic medication (even though on their website they will "price" it to you at your local pharmacies", and I had checked prior to all of this and knew my local Wal-Greens did carry it and they had a specialty department that did the paperwork and then would let the pharmacist know when it was all done and when he could fill the script. Well, guess what? Then I come to find out that Humana will NOT pay for the local pharmacies to fill these medications, it MUST GO through Humana's own "Right Sour Specialty Pharmacy"... so guess what that means, more delay, and it was delayed even further because the "local pharmacist" could NOT understand I HAD to have the prescription faxed over to Right Source!! I asked 5 different times to "fax" it to Right Source and kept continued to try and "run it through" to the insurance! And of course the insurance kept "denying" it!!! It he done it a hundred times, Humana is NOT going to pay for it, unless it comes from "their own" Specialty pharmacy! Wonder where the kickbacks etc go on that one?????? Of course FINALLY I honestly think my doctors nurse faxed the script herself to the correct place Monday morning. Then she gave me the fax number their and reminded me that she knew a "prior authorization" form would need to be sent to her and filled out, then sent back to Right Source! SO, I was lied to because Wal-Greens told me they had gotten the "PA" form. If they had then there would not be a call for another one I was told at Right Source, because it would have been in Humana's website, thus they would not NEED one, the one would suffice!!! So, let's start the phone calls and the whirlwind again! Now I had to "dig" through Humana's website (which I already knew the drill on this one) find that form, get online and fax that form to her (the nurse) at the doctors office. Because if I had WAITED for then "pharmacy" to request it, that might delay it for weeks because that mean the doctors office would have to dig it out, fill it out, and send it to Humana for approval. So rather than jump through another 25 steps, I tried to save a few and sent it to her myself. Which I am not sure even made a difference. For two days I continue to get the same response. Well, it looks like we are "waiting" for something... in fact yesterday's phone call to "Right Source" is what led me down the track to even when we receive all of the information it will take "72 hours" for review? What more is there to "review" when you have everything but it signed in blood and stamped by the President stating I need this medication!? And it just continues to float around and around within the spinning, ever spinning, world of what we should NOT have to go through! Now, with all of this, plus I KNOW without a doubt, it is not long, until the Sjögren's has taken everyone of my teeth and crumbled them to nothing. I have at least 4 right now, that are just "pieces" of teeth. I barely have any jaw or chewing teeth at all. And the ones up front are so fragile I fear biting into anything... I have my 4 bottom front ones that "so far" have not shown or I've "felt" them having issues. But that is just the problem. They can "seem" fine one day, and the next you are eating, and suddenly there is a "space" where part of a tooth was! No Kidding! It is insane. That is usually how it happens for me. And it does not have to be something difficult to chew and so on... just normal eating, and then my tongue will suddenly "know" something is missing... sure enough an entire side, or back of a tooth will be totally gone! I have two of my very back jaw teeth, one of which he could not even "fill it" permanently because the cavity was so deep, he said I would not be able to withstand the pain because of it being so near the root. So, he put some of the "temporary" type of filling in their but it has already itself became partially gone... and the one just like it began hurting and feeling "odd" yesterday, thus I am almost sure it will have to go soon also. Right now I would bet I have 6 that either need to be pulled or slightly a possibility a filling may help them. But since it feels as if an entire side of it is gone, I am betting all of them but possibly one have to be extracted. That would have me literally with maybe 3 jaw teeth in the top, and my 6 or 7 top and bottom front teeth... and those in the top are just "patched" together... they are trying everything to keep those in as long as possible.... So, I ONLY "saving" grace in the matter of my teeth is that there is a possibility due to all of this damage being from "Sjögren's. the insurance MAY pay for a specialist. In fact one of the "nicer" women at Humana even gave me the name of a doctor who is more of an oral surgeon that might be able to "screw" the teeth into my jaw bone (seeing that my jaw is not totally messed up with the osteoporosis) because "dentures" are NOT the answer for anyone with Sjögrens'. Due to no saliva or very little those will not "hold" properly in the mouth. I just am not able to fathom the amount of pain, expense, and what I will have to go through to have these teeth "fixed" or something done with them. Hell a "root canal" and crown is over $3,000.00, much less that kind of thing to be done! So, within the spinning web of ALL that is so amazing, and yes my birthday is Saturday... all of the horrid nightmare of bad stuff keep putting a damper on the good things coming my way. I am ready to throw in the towel... and just sit on the sofa, and forget it all. I've fought this battle way too long, and way too hard... and I am reaching the place that that mountain top is way too high for me anymore... I don't know where to turn... and I certainly really do not want to go anywhere over the weekend... I know it is planned to go, but between money, and the operation, and me not feeling well, I am just not in the state of mind to go anywhere right now. Hell i need to go grocery shopping and I'm having a huge struggle in trying to convince myself to go and do that. I am just tired of it all.....

Sunday, February 9, 2014

Feeling As If I am A "Deer" in the "Headlights" - Autoimmune Life

The Shadows and Inner Glow of An Autoimmune Life



For days now, I've again been struggling. Struggling in my own mindset. Struggling into between those shades and shadows, where there truly is no "black", nor white.... only shades and hues a what is a gray tone in a life that I so felt like had returned to colors.

Several months back, even just a couple of weeks back, I had found what thought was my precious "voice" again. Not the one that blabs at my Mom, nor fusses at my puppies, or rants and raves over stupid people, stupid insurance companies, and all of the wrapped red tangled web of a life called AutoImmune.... Life... that it maybe. I felt that just maybe I had unraveled some of that tangled, mangled ideology from my own soul, notice I think I still have one of those, yet sometimes it surely evades me. I was running in and out of the shadows, seeking where I felt I had found what I had been searching for now for more than a year. I can't really give you a "look" into the looking glass of those panes that I so seek, but when I find them, you too shall know it.

For then is when the words of wisdom just flow onto the screen. I type them, not even thinking about what the next word might be, not ever thinking will this sentence sound off, or will the audience that reads this "get it". None of those empty spaces even enter my somewhat empty head. Because, from my heart comes the words that are pure gold. That gold that the very streets of heaven are paved in. Yes, I do believe that the streets of heaven are paved with the purest of gold. I don't talk much about what most call "religion" or religious "beliefs". I have found just as many say, you never discuss religion or politics, hell not even on the internet, lest you want to cause the fight of your life, run your blood pressure sky high, and still be not able to have anyone "see it your way".... kind of like the humor in the fast food restaurants burger in the drive thru.. "Oh, yes you can have it "your" way"... well you may be able to have it your way... but I often wonder when you ask for yours to be unique or different, to be the "troublemaker" in the long line, what happens to that burger as they are preparing it for "your way"? Scary enough to wonder what they do with any of the food during the course of a day, much less when I am that troublemaker. I have to have "MY english muffin" without cheese and just the sausage. And yes I want strawberry jam. I sometimes wonder if they don't scrape that cheese off on the bottom of their shoe, wash it down, and throw the sausage down on it, then put it on the griddle quickly to "dry it off"!!! I have to laugh, because of the horror stories all of us have heard about where people get upset with the boss, or want to be a smart ass in Jack in the Crack, or CracDonald's as we like to call them, and do some thing hideous to the food. It happens. I just pray it is not going on where I stop and get my food from.

So, raising cane with anyone in the political or religious walk of life, is like stepping into a burning bunch of coals. I believe every one of us have a tad bit different view on both subjects. Thus I try to avoid the discussion of either as much as possible.

I have learned that the "loudest barking dog" gets noticed more. Or the person that puts their face, their name, and their own accomplishments especially those that one feels are true talents out on the internet for billions to see, may just be fortunate enough to be SEEN!!! It has SO worked for me lately. I have gotten into the "right click" (I hate that word "click"). It gives me connotations of the cheerleaders all standing around the lockers in high school making fun of all of us "homely girls". So, even though click may fit, still not in that stand point. Certainly not a bunch of snot nosed, immature, girly girls, with their short skirts and the large "pom-poms" (interpret that one as you see fit)... but more like this entire group of women and some men also, that have been brought together in a commonality of making illnesses that are still not getting enough "attention" out there for MORE research, MORE educations, EARLIER detection, when means a greatest chance of LESS damage to the entire body.... surely the JOINTS for one!

I've been dealing with once again a "loop" .... caught between the "doctor" and what he KNOWS IS BEST FOR ME! What the people down in their "pre-determination" of insurance should be trying to get straightened out, not take "no" for an answer, call the patient and tell them, you will owe 3,000.00. Your "insurance " said, you will "owe a co-pay" on the medication? This is crap!!!! If they would even bother to wake up they should know I DO NOT pay a "co-pay" or might I say "co-insurance" on an outpatient treatment. I DO pay I guess what you would call a "co-pay" which is $100.00 for an outpatient procedure that does NOT involve surgery, MRI, CT scan or a nuclear test. It   is very plain and simple as they nose on their faces. They cannot give me this line that they don't know... bull, I am NOT the only patient with the Humana plan I have. There are MANY patients on a Medicare Advantage Plan like Humana, and they know for the most part what benefits are before they even bother to call. What the DO NOT do, is get their "diagnosis" coding, and proper wording from the doctor done, THEN call. So, when they do not have the proper "type of procedure" coding for an "infusion in an infusion only setting, for medication that is a "biologic" that I CANNOT administer to myself. So, since they don't have their own paperwork in order, my insurance tells them I owe of course, as I said my $100.00 co-pay. But, due to the nature of how the "infusion" medication has to be coded, Humana comes back with well the patient will owe 20% for the MEDICATION! NO, I do NOT pay separate for a medication I cannot administer myself. It is NOT a Part D drug!!! It must be given in an infusion center, through an IV process. I surely am not going home with an "IV kit", a bag of lactate ringers (or whatever they use now), an IV pole, a bag of Rituxan, and am going to put the IV in and give myself the medication over a 5 hour period!!! In the first place that is about the stupidest thing I've ever heard of. In the 2nd place why are people that have NO CLUE what these medications are, what their use is, how they must be given... why are none of them educated???
You can believe when I was a "Patient rep" at the hospital for 6 years, I better "know" my stuff. Including what certain medications were for, how they were given, and what things meant as a whole for a patient whether surgical, illness, ER... of course I was not a nurse, BUT I was expected to be "educated" on much of the terminology and how some procedures were handled.

If that is not bad enough it is almost unbelievable what I have gone through this past three days just trying to get our local Wal-Greens pharmacy to "fax" my Enbrel Sure Click script over the the "Right Source Speciality Pharmacy".... I have been on the phone with this pharmacist at LEAST 7 times...
What part of "Fax" the script over does he not understand!??? I had called the Right Source, asked them exactly what they needed. They told me to have this pharmacy just fax over that script, that the "prior" authorization was probably already in the "Humana" system, thus they can get that and they can fill the script and mail it to me... for some reason, one that baffles the hell out of me, this idiot here at WG KEPT trying to run it THROUGH WAL-GREENS!!! Each time it denied it! And I kept seeing emails coming in and for my own sanity, I was just about ready to jerk his head off his neck through the phone, when I CALLED for the 8th TIME today! Thank goodness one of the girls answered the phone, took down the information and said she would make sure it got handled tomorrow. The only ridiculous thing she said was that it was "against the law" for them to "fax" a script over???? BULL!!! I've had them had to "fax" scripts over to other pharmacies when maybe one does not have the medication, so they "fax" it to one that does... or maybe it is cheaper and/or so forth... and there was never a problem... hell most of the scripts they get now are either "faxed" OR send via the computer, from the doctors???? Anyway, the phone rang about 15 minutes later, it was guess who??? I would NOT answer it, because if it was him, it was NOT going to be pleasant, not for him at least... so my husband answered it... "he" told my husband he had "faxed" it at 5:06 yesterday afternoon... well why did you try at 4:56pm try to put it through WG again!????? He waited until they were closed there, then faxed it... again it is delayed due to stupidity!!! What is worse, this man is supposed to be a PHARMACIST!!??? If he cannot understand the simplicity of "fax a script" how they heck will we trust scripts to be right????? Frightening thought at the least.....

Well, I am saying... this is an end to this post... I am a BIT CONCERNED that all of a sudden all my new traffic I was having suddenly just took a nose dive.... within a few days... anyone know possibly why???? Maybe not enough of my "own posts" and more about other stuff???? I have no clue, but it does concern me...

I am actually working on my book. I have about the first 10 paragraphs that I began on it late in the evening yesterday. But, this freaking bad headache from hell is giving me the blues... it is truly messing with my eyes ... and just reeking havoc with my vision... but at least I HAVE BEGUN!!!

I have NOT announced the name of it yet, BUT I am seriously thinking about putting the name out... I shall give it some thought... My fear at first was someone would try to "steal it" from me... but, I really don't think so...

Rhia

One morning early a couple of years ago, when we were heading for OK for the day to take Mom to the Casino!