Showing posts with label FDA. Show all posts
Showing posts with label FDA. Show all posts

Wednesday, August 9, 2017

SICK and TIRED of the "stigma" placed on so many of us with Chronic Pain and just how horribly it effects our lives, I feel it's time for me to step up and also state my feelings on the subject!

For a long time, I've kept my "mouth shut" when it comes to the business over those who want to make EVERYONE, with Chronic Pain and Chronic Illnesses, look like a bunch of junkies! But, I am just too fed up with it! It's gotten to the place that rather than focus on other countries who could destroy our nation with bombs, or talk about how to "help" those with pain problems, or use their talk to make available more research dollars, funding to help those who are ill, rather than make us all feel as if we are doing something wrong. 

As I use the example of someone with Diabetes, would you take away their insulin? A person with high blood pressure would you deny them medications to lower their blood pressure? I've been thru just about every type of other "pain reliever" you can imagine. chiropractors, injections into my spine and occipital nerves in my neck, injections into just about every joint on my body, I am on several medications for the Lupus and RA, yet some other medications that I had MANY SIDE EFFECTS FROM, that were supposed to help with chronic pain, I have every surgery that is a promise to help my pain, I walk daily, I don't stay sedentary, I try and do all I can to ease my pain. I've gone through NSAIDS that can cause me to have another heart attack. 

My 2nd MI partially was caused from chronic pain, and after the fractures to my hip, my pain level increased, due to many things such as the change of my gait, my neck in such bad shape, that he has to "stretch" it 2 INCHES, because I lost that much disc space... So, I KNOW ABOUT ALL F THE alternatives. Some of which work wonderfully for some people. I am thrilled that some find relief from things such as Gabapentin, which caused me to "hallucinate" even on a small dose. So, after going through SO MANY YEARS, of every type of other treatment available, what "works" for me, may not be what works for someone else. "Chronic Pain" in itself is extremely complicated. Due to having SO MANY CONDITIONS, that can cause this type of pain, it's taken an "army of physicians", medications, treatments, surgeries, injections, therapy, you name it, I've done it to find "what works" for me, with the least amount of side effects possible. 

So it just "burns my butt" to hear the crude and down right stupid remarks some say about us patients, that live with pain daily. I give a good example. I had NO CLUE, HOW PAINFUL, a fractured hip was, UNTIL IT HAPPENED TO ME! That was one of the most excruciating times in my life, as far as pain goes. OMG, kidney stones are horrible and unrelenting at times. But those two fractures of my right hip.... were almost unbearable. Every tiny movement caused me so much pain, I thought I would go into convulsions. Even being put on the stretcher and taken over my lawn to the ambulance, I was literally screaming, crying and probably cursing so badly and loudly, all of my neighbors heard me! I even waited over 2 HOURS, before calling the ambulance.
  


I wanted to "make sure" I had a fracture, and not just a "bruised hip" before calling the ambulance. Then them trying to do an X-ray or moving me in any way, I shook and screamed in so much pain. And those things are "acute pain" issues. So, you take some of those and put them with someone often daily or many times in a month's time, and see how well they would function in life for very long. I tend to be one of those people who try and not "show my pain" or illnesses in public. But, believe me just because I am not limping or using a cane, or whining and moaning in pain, does NOT mean that it's not there. So, some of you may get sick and tired of seeing me post about all of this ridiculous uproar over this so called "crisis", but I intend to keep on getting the word out as much as I can, and supporting EACH OF US, who would be "lifeless" if we had to withstand chronic pain and illnesses without any type of relief. 

The LONG LIST of illnesses that can cause relentless pain are endless. You can have "diabetic neuropathy", many different types of arthritic illnesses, autoimmune illnesses and syndromes, nerve pain from degeneration of the joints, of bones, of the spine, migraines of many types now, TMJ, FM, torn muscles and ligaments, surgeries sometimes can cause pain, "neuralgia" comes from so many types of illnesses, whether sciatic nerve pain, from a lower back issue, or pain in the arms, wrists, fingers, from a cervical neck problem, or from problems with diseases causing bone pain, cancers of many types, all types of "myalgia's", torn muscles, chronic sprains, cartilage gone in joints, certain types of chronic bladder problems, certain intestinal chronic health problems, and the list goes on and on about health conditions that can cause or contribute to chronic pain and chronic illnesses. 

I've decided that I am going to "fight" as much as I can online, with petitions, letters and such the ridiculous claims that "everyone" who takes a pain medication is "addicted" or an abuser. Whether it be governmental bodies, the DEA, the FDA, or the President, (HOW CAN any of those people who have NEVER HAD A SEVERE AND CHRONIC PAIN DISEASE POSSIBLY UNDERSTAND OR KNOW ALL OF WHAT WE GO THROUGH IN A SINGLE WEEK?" ALSO, I am SICK OF the health insurance companies "calling" constantly, wanting to "go over" your medications "over the phone" when NOW THEY DON'T EVEN SAY WHO THEY ARE ON CALLER ID! Now rather than saying the name of the company, Caller ID usually say "1-800" number calling... how do I KNOW THEY ARE WHOM THEY SAY THEY ARE? Why do I want to "discuss" something that honestly, is NONE OF THEIR BUSINESS! That is between MYSELF, MY PHYSICIANS, and if I NEED HELP, MY OWN PHARMACISTS? It is insane how many calls I get from so called health insurance, wanting to discuss, "this, that or the other" about my "health".... I HAVE A LIFE TOO, and I don't care to sit on the phone for an hour telling a person I don't know and have no earthly idea who they are about my medications or anything else for that matter!!!!! 


We are WARNED AND WARNED ABOUT NOT GIVING OUT PRIVATE information over the phone to those we don't know.... so this is a prime example of what irritates the hell out of me!



I got a call earlier in the week, from a "guy" who I didn't even "understand" asking for me? He never said where he was from, or whom he worked for, and then when he mentions my medications, I got irritated and told him I was NOT at that time discussing it with him. In the first place, THE MAJORITY OF THE TIME, THOSE PEOPLE EITHER CANNOT SPELL 

MY MEDICATIONS, OR THEY HAVE NO CLUE WHAT THEY ARE FOR! Why should I have to "explain" those things over the phone to anyone????



So, some of you may get sick and tired of my ranting on the subject, but enough is enough!













Friday, June 9, 2017

Nightly News and the STORY OF THE FDA DOING SOMETHING TOTALLY INSANE - TAKING A DRUG (PAIN MED) OFF THE SHELVES FOR AN INSANE REASON!

 I was SO MAD and SO UPSET over this story I just watched on "Nightly News" that I HAD to come and post the video along with MY OPINION!!!! THIS IS NOT THE PHARMACEUTICAL COMPANY'S (ENDO) FAULT!!!! IF WE ALLOW the FDA to start doing this then WHEN WILL THEY TAKE TYLENOL AND BABY ASPIRIN OFF THE SHELVES???? Or TELL DOCTORS AND PHARMACISTS what they CAN or CANNOT prescribe for patients!!???? Just because a "group" OF STUPID PEOPLE TAKE A MEDICATION OPANA ER (by the way before I had my ain pump put in I was on this medication and it was the 1st one that contained a chemical that if you altered it by smashing it, cutting it, melting it and so forth IT DOES NOT HAVE THE EFFECT!!! Once a "drug" of ANY KIND comes off the Pharma's shelves, THEY CANNOT CONTROL WHAT A PATIENT DOES OR DOES NOT DO WITH IT!!! Nor can anyone but that patient!!!!! IF THEY can't get "Opana" then they will get SOMETHING ELSE.... NOTHING the FDA does will KEEP THOSE WHO ABUSE IT BADLY ENOUGH TO KEEP FROM FINDING SOMETHING!!! mMANY PEOPLE Use their ANTIDEPRESSANTS to try and commit suicide! IS THE FDA going to REMOVE ANTIDEPRESSANTS FROM THE MARKETS????? This is totally insane!!! IF WE stand for this AS PATIENTS, AS CARETAKERS, AS ADVOCATES FOR CHRONIC PAIN PATIENTS, AS ANYONE WHO DOES NOT WANT THE FDA TO RULE OVER WHAT WE CAN DO.... or NOT DO... They need to send an email, send FACEBOOK POSTS, SEND TWITTERS, ANYTHING TO SAY "HELL NO" I will NOT stand around with my hands down and head in the sand and allow this mess!!!! GGGGGRRRRR! This one really gets me extremely upset.... as a legitimate chronic pain patient that could NOT live without my Pain Control.... I would have already passed away from pain!!!!!! I CHALLENGE EACH ONE THAT DOES not agree to DO SOMETHING!!!!!







http://www.nbcnews.com/nightly-news/video/fda-to-drug-maker-please-pull-this-potent-drug-off-the-market-964253763552


Saturday, December 26, 2015

Chronic Pain Medications, Narcotics, the CDC, Public Comments and More information I feel you need to read...

I have to say, that some of this is very true! I do know just from speaking with my pain specialist, that there are many programs all doctors can attend, that are free, and it gives them the knowledge to give patients with chronic pain issues, the proper diagnosis, and then the proper treatments, including medications if needed. 

But WE will NEVER see a CHANGE unless WE as a NATION, as a COMMUNITY, come together as ONE, and demand THINGS CHANGE! I've learned a great deal from my pain doctor about things such as Medicare Advantage Plans, Medicare itself, why many doctors have issues taking some of those policies, or even Medicare... it took my own pain doctor over 2 YEARS and then he had to go in front of a judge JUST TO GET PAIN FOR 2 SURGERIES! Doctors do NOT have time, and they cannot possibly run a practice if they have to wait YEARS to get paid for a procedure... My pain pump surgery alone will be somewhere around 30,000.00 or so... Just the pump in itself, is extremely expensive... 

so if I doctor does a few of those, and then has to wait YEARS to get paid??? They can't possibly stay in business like that. Plus I have heard some doctors admit, one reason they do not give out pain medications is because they feel they are not "trained" enough... our newer physicians ARE now being trained in chronic pain, Lupus, RA, autoimmune illnesses, and that is a good thing. ALL physicians should know about these diseases, and about chronic pain... So, I believe that the CDC has some to do with it, but then I feel "Congress" and the likes also have their fingers in it, along with our "insurance, Medicare" and so forth... and the fact that WE have to stop Hiding our heads in the sand, and STAND UP AND TELL OUR STORIES!!!! It is totally imperative that WE STAND TOGETHER and make our voices heard. 

We have some great organizations out there, the US Pain Foundation​, Power of Pain Foundation just to name two of them, but they also NEED US to HELP them get the word out... that is the ONLY way we as patients, caretakers, family and friends, will get the treatments we need, under the right circumstances, and not have our physicians "frightened" to prescribe the medications their patients need.... many of us cannot AFFORD a "specialist".... And even Finding a "good Pain Doctor" is NOT EASY! 

Can you imagine walking into a "Pain Management Doctor's Office" that ALSO IS A TEACHING UNIVERSITY, to find out THEY do NOT "prescribe" pain medications, but they send a 'RECOMMENDATION" TO THE patients PCP to give them the medications??? now how stupid is that!!! Talk about nuts! Then WHY call themselves a PAIN MANAGEMENT CLINIC???? This just happened last week to a friend of mine, and I know of a doctor here, that is a "pain doctor" but he got "reprimanded" so he can prescribe "some medications" but nothing that would be "narcotic" in nature... so you go in, thinking you will get the help you need... and then find out he can give out other medications, BUT he cannot prescribe any type of narcotic, even though he tells you that is what you need!


Don’t Blame CDC for Poor Pain Care — Pain News Network


 

 

 

Saturday, December 5, 2015

Fed Panel Opposes CDC Opioid Guidelines — Pain News Network - I shall add more to this post.. but this is CRITICAL FOR ALL OF US TO STAND UP FOR OUR RIGHTS AS PAIN PATIENTS!

Fed Panel Opposes CDC Opioid Guidelines — Pain News Network






PLEASE READ THIS article, and be sure to also send it out on Social Media and everyone you can... we must fight this nonsense.... if we sit around and "allow" this mess, MANY of us will DIE from "intractable pain".... it can cause a heart attack, and all types of other "deadly" issues if someone must try and cope in severe, daily pain day after day with NO help from medications and so forth! This is INSANITY as it's most INSANE!!!!

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!

Thursday, October 7, 2010

Extremely Important to take Action - Pain Medications & FDA Meeting on October 8th

http://www.painfoundation.org/take-action/natl-efforts/rems/

 This is EXTREMELY IMPORTANT! The meeting about Pain Medication and A Chronic Pain Patient Bill of Rights will be put through the FDA on October 8th! All of our letters need to go into them before this important meeting. The URL will take you to the American Pain Foundation page that tells you exactly what steps to take. All of us patients, family, spouses, caretakers, doctors, and all please take time to you your letters in. :)

Thursday, September 30, 2010

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

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

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

Thursday, July 2, 2009

Critical, URGENT, FDA trying to BAN Script Pain Meds! Please sign petitions!


I wanted to update all of you in regard to what the FDA is trying to potentially do, which would be a nightmare to all of us that suffer Chronic Pain, along with our Chronic Illnesses. The one good thing is that the House and Senate did pass the "Pain Patients Bill of Rights". :) So, I applaud Congress for that one! :)

But, on not so good of a note, and many of you may already have seen this in the news... the FDA is potentially trying to BAN extended release narcotic pain medications! I am venturing to say, that there are many here with the group that suffers just as I do, from horrible Chronic, sometimes even Daily, pain. This would be a horrid situation for us, for our families, our jobs, our friends and our quality of life. When I finally found my current pain doctor, I was overjoyed! Not only was he ready to help me with my pain medications, he has so far been excellent regarding keeping my pain under control. For that I am blessed.

As anyone with Chronic Pain knows, many times our prescription pain medications are what keep us having a full life, having happy spouses, happy kids, keeping our jobs, and making our lives as normal as possible. Without them, most of us would be in the bed, on the sofa, rendered not able to do anything. I know for me it was the difference as black and white. Within 2 days of beginning my medications a year ago, I felt better than I had in many, many years... probably 7 or more.

Now the FDA is trying to put a BAN on some narcotic pain medications and if you have seen they are also possibly taking Tylenol at higher doses and putting it as a prescription, and then lowering the doses in the over the counter acetaminophen.

This is an urgent, critical matter and I have two petitions that are directly going to the FDA, The House, The Senate, and the President, as well as my own House Rep, and Senators.

Here are the URL's about both petitions, along with the American Pain Foundations information and enlightenment on the entire thing.

I urge you to read this information when you can, and if you feel moved to sign the petitions I would be most appreciative. Anyone knowing what Chronic Pain is like, knows this would be disastrous to all of us.

Now, a little about my situation. I was having issues with high blood sugar levels, and had been having higher than normal levels from the past 3 or 4 glucose blood tests I had done. My PCP did a glucose tolerance test, and it showed "normal" but still I am seeing spikes in my levels when I do the check at home. So, I still am possibly sitting at the "pre-diabetic" position, but for now I am just taking it on my own, and keeping an eye out.

Also, my PCP, due to all of my blood work, now confirms, I do have Lupus. I also have Sjogren's and Raynaud's, to add insult to injury. I had a very horrible flare, that is still kind of going on, that caused me to not just have cracks in the corners of my mouth, but they got infected, thus I had been on antibiotics again for two rounds. My bruising is horrible! I look like I have been beat from my neck to my toes with a ball bat! Plus some of it is not just bruising, but petechia, which is kind of like tiny blood vessels rupturing and I have what looks like flat blood blisters everywhere.

My PCP finally decided my best bet in finding out what potentially is causing this is sending me to a hematologist. In fact my appointment is this afternoon. I DO NOT look forward to yet another doctor, also having to go to Dallas, but luckily he is in the same building that my pain specialist is in! For that I am blessed! I hope that he has a good bedside manner, is not just test happy, and can find some reason for the horrible bruising and petechia, and hopefully how we can get rid of it. With the Summer here and HOT weather, I am totally embarrassed to go anywhere. People just stare at my arms and legs, and I have to wonder if they think I am have horrible contagious disease, or if my husband is beating me....LOL... I found some "cover up" cream for my legs, which helps some, plus I have been using the self-tanning cream. Those both help a little on my legs. The darker my skin is, the bruising then is not as noticeable.

I am now on Methotrexate. My PCP and I had discussed it the past couple of visits I had with him, especially since I am having flares frequently, and it seems I just have a hard time shaking them. So, I am now on Plaquenil, Methotrexate, and 5mg. of Prednisone.

My husband Jim, has also been having one heck of a time with his lower back pain. We are now working on getting him some possible financial assistance so he can go to a new pain specialist over in Waxahachie. Jim has no insurance, he does not qualify for state assistance, due to the fact here in TX, the ONLY way to get Medicaid is to be pregnant, or have kids under 16, etc.

So we have a county program for very low income people that helps with medical bills. Most counties have what they call an Indigent Health Care Program, for those who cannot qualify for any other type of assistance. We hope, from what the PCP says, if we can get the financial assistance to see this Doctor, he would possibly due the injections in Jim's back. So keep him and myself both in your thoughts over the next weeks.

It is not just HOT here, but way higher than HOT!! We have had little reprieve from triple digit temps, along with a high humidity and dew point levels, that make it seem 110 degrees plus now for at least 10-12 days. It is horrible.

As I finish this up, I want to wish all of you a safe, Happy, and Beautiful 4th of July weekend! :)

As we have seen so much "bad" news from the situation in Iran, to No. Korea and their stunts, then the loss of several celebrities this week, including Farah Fawcett who finally lost her battle with anal cancer. She was an incredibly strong and brave woman that fought it since 2006. If you saw her special on TV I am sure you were touched by her story also. If you did not see it, I think they are planning to air it again... so if you can catch it, it is an incredible story.

OF course, we lost Michael Jackson, Billy Mays (Mr. Oxyclean himself), and several other "famous" people over the past 7 to 10 days.


Here is the information below about the URL's for the American Pain Foundation, and for the petitions....

I urge you to go to this URL and add your name to the petition. Actually I have one on Change.org and one on Care2! This is an extremely serious situation and if you have kept up with the news you have already seen they are considering making changes to all types of over the counter and prescription pain medications!

For anyone with horrid Chronic Pain and Illness this would be a night terror you live in forever! This could mean you not being able to get your proper pain medications, it means putting a strain on our good pain management specialists, and potentially ruin Chronic Pain Patients quality of life, possibly lose their jobs due to the pain, harm family life and relationships, and make many of us have no quality of life.

PLease see these two URLs:




For more information about this situation and a better understanding of what the FDA is trying to do is on the American Pain Foundations Website. Their URL is:



The Pain Foundations website is one with the latest information on all types of things related to Chronic Pain and Illness. You will find it very informative for everything from the latest research, medications, government related issues, possible bills going through the Senate and House, plus so much more.

Have a wonderful July 4th, be safe... and I hope pain free....
Rhia




by the way... those of you that have been on or are on the Methotrexate, how long did it take for you to notice a difference, if at all? What kinds of side effects, if any did you experience? What is your dosage? Are you or did you take Prednisone with it, or by itself? Plus if you think you know something about the medications, or anything else in regard to the Lupus, please post here or email me.

By the way, for patients with a New Lupus diagnosis, or if you have a family member that may not understand just how any of the autoimmune illnesses effect us... I just read a wonderful book. It is geared for someone newly diagnosed, and the first year of having Lupus. Even though I have read an enormous amount of information on line, etc... this book really helped me learn several things I did not know. It is written by a woman that spent between 10 and 15 years of doctor after doctor, medication after medication, test after test, diagnosis after diagnosis... before she found a doctor who figured it out.

The name of the book is:

"The First year of Lupus" (A Patient-Expert Walks you Through Everything you need to do and Learn).
The authors name is Nancy C. Hanger.

She also goes into things such as overlapping autoimmune issues, from Sjogrens' to Fibromyalgia.

I close for now in wishing everyone is healthy and having a wonderful Summer...

My thoughts are with each of you.... Rhia


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