Good News on the Homefront for a New Generic (Biosimilar) Inflectra for RA, Crohn's, and more....

Brand New Generic Inflectra FDA Approved for the Use in Several Diseases Including RA, Arthritis of The Spine, Crohn's disease, Psoriasis and more....





http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm494227.htm

The "NIghtly News" and "Heroin Safe Zones" There is about 3 Billion things wrong with this!

http://www.nbcnews.com/nightly-news/video/this-heroin-safe-zone-permits-users-to-shoot-up-658159171526



I could not believe my eyes or ears last night! The CDC and the Congress want to "screw us" with Chronic Pain out of getting out medications, BUT GIVE HEROIN ADDICTS A PLACE TO USE????? WHAT THE HELL!!!! There is about 100 billion things screwed up in all of this!

Latest Addition "Monday MOrning April 4th, 2016 of my Newspaper "All Things Autoimmune, and much more Health, Technology and so forth!

Latest Update for my newspaper Monday Morning "All Things Autoimmune and More"


http://paper.li/ravishingrhia/1438808814#!headlines

PLEASE HELP THIS MONEY TO ALSO HELP THOSE IN THE CHRONIC PAIN COMMUNITY - SIGN THE PETITION

 

https://petitions.whitehouse.gov/petition/utilize-part-1-billion-granted-toward-opioid-epidemic-help-chronic-pain-pandemic-america

UPDATES ON MOM, the Dementia, Home Health Care, MY CERVICAL NECK SURGERY COMING APRIL 13TH, and EVERYTHING ELSE.....

I wished my "mind" would rest, but I just cannot stop thinking about what ALL has to be done. There is so much to get done for Mom, but also my own stuff, it seems endless. To add to that, I have not felt the best myself, my night terrors are just horrible, and I have had a headache from hell now for at least two days. I know my doctor told me I had a sinus infection last time I was in, and he put me on antibiotics, but at night I wake up so stopped up I cannot breathe. I have to use some nasal spray, and then I can try and get some sleep, but I feel like I am suffocating. I know part of it is this stupid weather.... 

 

we have had NO winter, and now one day it is almost too hot, then the next, like yesterday and even today, it is very cool... it is sunny, but we have had rain for a couple of days now, so my back lawn HAS to be mowed before it gets too tall for me to do it with my new mower. But, our mornings the dew is so heavy it is like rain. So, there is no way to mow it, until later in the afternoon once it dries out.,.

 

I have to go and get Mom a microwave today, and I need a few things, so I have to go do that first, and then I guess I will try and get this back yard mowed... I am also trying to knock down some of the taller grass on my back lot before the city starts griping and then I will have to pay someone to come in with a tractor to mow it... I had gotten some of it down and then sprayed the weed killer on the weeds, so I had it kind of coming under control. Then of course it rained, and without the sun, now it is getting tall again, and I still have not had time to get the people that may get these bees out of that old piece of bus back there... so it will be hard to find anyone who will help me try and get that back "forty" as I call it cleared and cleaned up... I have so many dead trees, and limbs and the grass now is getting too tall, plus my neighbor never got all of his crap from the goats and chickens he had back there before he had to take the goats somewhere else... it was so nice with them back there they kept the grass, weeds and even all of the trees trimmed for me...LOL.. 

 

They would stand on ther back legs and reach up into the trees as far as they could and eat the leaves out of them, so even the trees stayed nice and trimmed back there... anyway, I hae been trying to do a couple of things here I needed to do at home, and now I am going to take my meds, eat some cereal, get dressed and go and see if I can get that microwave and pick up the other stuff I need... then I have to go over to Mom's and check on her... get her medications reorganized, and see how she is doing... she was in bed again yesterday when I went over, and I gave her some of her pain medication for her back, and got her the phone, some water, put some Ensure on the nightstand, and left everything that she needed and came home. I have not talked to her this morning yet but I had to apply for a new insurance card, SS card and her Medicare Card... somewhere down the way she LOST those in the past week or so... I cannot find them anywhere, so I got that done this morning... but I still have to go to the post office, with the form I filled out and her Drivers License and Birth Certificate to get her SS card... I thought I maybe able to do it online, and could everything else, but not the SS card yet... in some states you can order it online now, but TX is not one of them yet... anyway, thanks all of you... I need to get going... I HOPE TO BE A BIT MORE SETTLED TOMORROW SO I CAN CATCH UP HERE, ON MY BLOG, MY NEWSPAPER ETC...

 

I am so far behind on my advocacy work, blog, and everything... I am just frustrated I cannot find time to do my own stuff... and I am supposed to have surgery on my neck on April 13th!!!! I just do not know if I will be able to... if we get HOME HEALTH coming out for MOM by then, MAYBE I CAN HAVE THE SURGERY, but I MYSelF MAY NEED HOME HEALTH HELP AFTER THE SURGERY FOR A WEEK OR SO... I will be in a NECK BRACE 6 WEEKS! And I won't be able to LIFT, BEND ETC... until that begins to "heal" which takes at least 6 weeks for it to begin those BONE GRAFTS TO BEGIN TO ATTACH TO ALL OF THE HARDWARE IN THERE... OMG YOU SHOULD SEE ALL OF THE STUFF HE TOLD THE INSURANCE COMPANY HE HAS TO DO TO MY NECK... HE HAS TO TAKE OUT THE OTHER HARDWARE, AND TRY AND FUSE THIS OTHER DISC, THEN PUT IN NEW HARDWARE TO HOLD ALL OF IT IN PLACE... so this is really much more complicated than my 1st one.... plus my lumbar spine is giving me fits also, so I know I face having that surgery also... Hugs to all of you, Rhia Steele "All things Autoimmune"

What A NIGHTMARE FOR CHRONIC PAIN PATIENTS, FAMILIES, CARETAKERS... THE CDC, TRYING TO GET CONGRESS INVOLVED & Just how Insane all of this is!

HAVE ANY of YOU that are in CHRONIC PAIN or are interested in CHRONIC PAIN ISSUES due to being a caretaker, or having a loved one that deals with CHRONIC PAIN SEEN THIS????!!! Talk about ONE GARBLED BUNCH OF bureaucratic RED TAPE GIBBERISH, THAT BY THE WAY THE CDC IF YOU DO NOT ALREADY KNOW IS getting CONGRESS in on all of this, and CONGRESS could PASS LAWS OR BILLS that MAY INHIBIT OUR PHYSICIANS and how they treat PATIENTS!!!! The GOVERNMENT SHOULD HAVE NO SAY in how our physicians treat patients with ANYTHING!!!

I was just blown away by this... I have read all of the other things going on but when I FOUND THIS, it made me so upset and so mad, I am definitely going to write to my Congressmen and Women and let them know exactly how I feel about this. I am watching MY OWN Pain Doctor who has been seeing me for almost 9 T+YEARS and has NEVER hesitated to do what was necessary to keep my chronic pain level as low as we could so I could function in a daily world, take care of my home, my MOM, and have some "quality of life". Yet NOW I have noticed SUDDENLY he seems HESITANT or like he is upping my "pain pump" meds very slowly after me having the pump since 2010!!! He replaced it on Dec 29th, 2015 after it had a motor stall, and he has yet to get my medication level back up to where it was.



NOW, I WILL SAY my pain seems to be a "bit better" since I have been on the Minocycline for the RA/Lupus. It has been about 3 or 4 months and since we are doing the pump meds slower in upping the doses, I have noticed it could be I may not need to have the pump set as high as it had been which is awesome! BUT, I also am concerned deeply about his "manner" about it all now. Suddenly, since this CDC mess started even he seems like he is being even more overly cautious about the medications and how much I need.

Now, he is very willing to up it more even next week, if I am still not at a comfortable enough level, so I can say he is not giving me any issues such as that, but it is just what he says, or more "what he is NOT saying" that really has me concerned. So, I wanted to post this, and I will put it up on my blog, and my other Facebook pages, and I am going to try and have this as an article on my newspaper (which by the way, will be "linked in" with my blog soon)... but I just almost fell out of my chair when I began to try and wade through this ridiculous mess, and see what the CDC is doing... and they are "lumping" people together... for instance, if someone had been on a prescription pain medication THEN went to something such as heroin, rather than say that MANY of them get those "prescriptions medications" off the streets NOT FROM DOCTORS!


So, it makes it sound like MANY more get scripts and then go to heroin from their physicians and that is just wrong! If they got down to the line of whom gets "illegal prescriptions off the streets" then decides to go to heroin, due to it being cheaper etc... those people should NOT be COUNTED into those who go to illegal drugs after taking prescriptions from doctors. So, their "numbers" are "skewed" as to those types of facts. So, just coming up and saying "so many thousands" go to illegal drugs after opioids that are "legal" is not correct.

And are they taking into consideration the number of those who are in "chronic severe unrelenting pain" who cannot get help from doctors, that decide to commit suicide? I have had over the years several people ask me directly, How do you live and try and have a life with that much chronic daily pain? Then They add" I believe" I may just jump off a bridge, or kill myself before I could live my life like that!?" ALL of us NEED to write our Congressional Leaders, get our physicians involved, get our family members, friends, those who have chronic pain, and know they would not have a life or a quality of life without the proper medications.

I DO NOT believe in "quacks" that just hand out medications of any type just to get people into their offices for money! Those that do that to rip off Medicare, Medicaid, Insurance Companies and "their patients" should be removed from being a physician. I also do not believe that some "so-called" pain management clinics are "truly" what they say they are. When I walk in to a physicians office, that is "supposed" to be a Pain Clinic, and everywhere you see a sign stating "We do not prescribe pain medications" to me that is a red flag warning that something is wrong!


Then DO NOT call your "clinic" a "pain management clinic" if you are not offering ALL TYPES of pain management, whether it be, alternative things, therapy, acupuncture, and other types of pain management items, injections and so forth... but that should be NOT considered "pain management".


There definitely needs to be a "different name" for those who ONLY OFFER "alternative" ways of pain control. It is misleading to patients, and unfair to us that think we are going to someone who can help us with pain, whether medications of any kind are involved or not, if the first thing you see is that you do NOT prescribe pain medications. It could be that "opioids" may not be needed, and there are certainly other types of medications, such as muscle relaxers, meds for certain types of nerve pain, NSAIDS for those who can take them, Migraine medications etc... so the "host" of pain control medications are NOT ALL "narcotics"..... This is a HUGE PROBLEM that needs to be resolved. And I know there are people who "abuse" the system. They are NOT legitimate patients and they get medications for other reasons other than for real chronic pain. BUT, the THOUSANDS OF US who are TRUE PAIN PATIENTS should NOT BE PUNISHED due to those who "choose to abuse"...


Rhia - PLEASE Do your own research and take time to write, call, email your Congressional people, the CDC, and spread the word through your own Social Media Networks!

Here is the link to this bunch of garbled mess from the CDC!


http://www.cdc.gov/mmwr/volumes/65/rr/rr6501e1.htm



These photo's of my legs, and the abscesses are just more of a small "portion" of suffering from the pain, and all of the other complications from Lupus, RA, Sjogren's and so forth... We "NEVER FOUND OUT" exactly why all of these appeared on me... but it took over 2 YEARS for it to all clear up.... They just told me after I went through every test and specialist that it was the Lupus... and then the cellulitis below that turned into abscesses on both of the tops of my thighs tool=k over 6 MONTHS to finally "heal" and now I have two huge terrible looking scars from them... and talk about pain... I had to go for 8 weeks once a week to a "Wound Care Specialist" in Dallas, that debrided those every week, in other words "cut out all of the dead materials and put special material in them that was a "collagen" to help "fill in" and heal those very deep wounds... at first they were about 3 inches deep and at least 2 to 3 inches wide...

Below are the wounds from the cellulitis that both turned into abscesses.... and in between me seeing them, I had to clean these myself, pull the packing out and redress them daily... I was on 2 different antibiotics for 6 months at least... and the still look horrible... I love spring and summer, but I dread having to have people "see" what they look like now.... 

Elderly Parents, Alzheimer's, Dementia, Falls, ER's, and so forth....

Please continue to keep my Mom, myself and family in your thoughts and prayers. Things are just getting worse. Mom was on the floor when I got there yesterday, she had fallen and had been laying there for she said 2 hours. She "thought" she tripped, but I am not sure that is what happened. Thank goodness, I had the paramedics come out, and we did take her to the ER to be checked over. She had a bump on her head, and was complaining of her neck hurting, and being of course "sore" all over... nothing showed to be broken, and she has a couple of bruises, and a couple of small "wounds" but nothing bad enough for stitches. This situation is just getting worse by the day. I was there on Sunday afternoon, and her medications once again were all mixed up. I had just had them all correct in the pill box for 7 days on Saturday. So, I got there and found Sunday, part of them "moved" around, and 3 or 4 days of them "missing"... I explained again, about that she cannot take 2 or 3 days worth of medications... or NOT take any at all. But, I honestly do not think she "gets" any of it. She was so "out of it" Sunday, I was extremely upset and concerned when I left there. But, I also was not feeling well myself, and I am dealing with my own pain pump NOT set correctly, and I am not sure what the hell is going on with my own pain doctor, but he was "off" himself week before last when I went in to have it refilled. He had the settings "way off" and I wondered why my pain was still so bad. I knew we had not gotten it all the way back up to the normal range that he old pump had, simply because we did not want to overload my system with too much all at once, but it is definitely NOT near being correct. Even the 3 boluses I take daily are set at 0.1 and should be (1.0)!!! So a HUGE DIFFERENCE... and I had been taking I guess my oral medications a bit more than usual because I have been compensating for the pump not being set correctly. Anyway, I go in this afternoon, but not until 2:30PM which is so late in the day to have to go to Dallas and then get out of there before rush hour and try to get home... plus MOM has STILL NOT GOTTEN ANYTHING FROM THE MARKET, and that is what I was supposed to do yesterday, until I got there and she was on the floor. Then I was really pissed at the ER. They NEVER CAME IN AND TOLD ME ONE THING. THEY REALLY NEVER ASKED ANY QUESTIONS OR TRIED TO ASK ABOUT OTHER HEALTH ISSUES, and in fact I DO NOT THINK ANY DOCTOR EVEN SHOWED THEIR FACE. 

There were two women, one of which I knew was a nurse, and she was not pleasant at all, and then another woman, who possibly was a physician but I did not know and she never said so. They did not ask me any questions, and I had left when they were taking her for the CT of her neck and head... the girl told me it would be 45 min to an hour before they would have the results, so I needed to run home, and check on my pups. 

I did not know I was going to be gone that long when I left the house, so they needed to be checked on. By the time I got back to the hospital no more than 25 minutes later, she was DISCHARGED and sitting in a chair, and they were trying to call me to come and get her!!!!!!! Again, no word from a doctor, no questions, nothing... they barely got a wheelchair to bring her out! And at the time all of this had happened at the house, she was not able to stand up by herself... so needless to say I am NOT pleased with anything I saw, and even the paramedics were not all that "pleasant".... 

I won't go into details, but basically I called the regular phone number and not 911 because I did not consider it a life or death emergency... Mom was talking, breathing, not screaming in pain, but she was not able to get up and she was complaining of her neck hurting... so I call the regular ambulance line... well when the paramedics got there and I met them outside, and told them she fell etc... and one of them said do you want to take her to the hospital? And I told him well if something appears to be broken, or she is not feeling well or in pain when you get her up, then yes, BUT, if she is able to stand up, or not complaining of pain then maybe I will not take her to ER but call her doctor... and he got about half smart with me and said well then why did you call 911? 

And I told him I DID NOT CALL 911... I called the regular ambulance number so if they from there made it sound like it was a 911 call I cannot help that... anyway, I did not get home until 4PM or after and I am mentally, physically and emotionally drained, even this morning... 

I have to get a home health care nurse set up to go out and see her when I am not there, or in between me being there, because I can't be there 24/7 and even though I go everyday, or call if I don't go, someone else needs to come in and check on her, her vitals, make sure she is taking medications properly, and so forth... I don't think she is eating properly... and there is just lots of stuff that is just not right, and this has happened way too fast... within 3 to 4 months she went down this quickly.... anyway, I have to get her stuff done this morning and then get myself to the doctor in Dallas this afternoon, and I hurt from head to toe... so again keep us in your thoughts and prayers.... Rhia