WORLD HEALTH DAY APRIL 7TH, 2016!!!

With a WORLD FULL of terrible diseases, illnesses, syndromes, and places that lack healthcare, fresh drinking water, food, & even being able to live in more of a sanitized place, all seems impossible when so many of us take for granted clean drinking water, food, and being able to live where we are in more sanitary conditions.

Yet, with all of that said, look at HOW MANY OF US, even in the best of places, still have so many chronic health conditions, that often go untreated, and even undiagnosed for a very long period of time.

In a Nation, who is supposed to be a Leader of the Free World, and the amount of funds the pour into all types of Health Organizations, we still deal with cancer, all types of AUTOIMMUNE DISEASES, that have NOT even been really explained, and so much more needs to be known about them.

When you walk through your stores, you see all kinds of people, old and young, that are either obese, or are "appearing to be ill", or weak, and our pharmacies seem more full of those standing in line for prescriptions each day.

We still have many, many diseases that are not answered, we do NOT have a viable reason for why they exist, or why we cannot find a way to destroy them. With our "global' society becoming closer each day, with airlines, and fast transportation, severe diseases, such as the latest "Zika", or something such as measles, or polio that had once almost been eradicated from the free world, and many of our nations, NOW are coming back to our nation, and nations that thought they were free of dealing with something such as the whooping cough, or diseases that we only have to be inoculated from if we are traveling to certain countries. Scarlet Fever is another disease long thought been wiped off our continent, and yet in certain places it has reared its ugly head again.

Small Pox is another disease that we long ago were able to quit getting vaccinated for, yet in some of these countries where they have no way to be vaccinated, that live in horrid conditions where such types of viruses, diseases, and germs live, those illnesses can spring forth, and one day be a problem globally once more...

We feel like with all of our hand washing, laundering, keeping our homes as free of germs as we can with different cleaners, sprays, and viral fighting defenses, that we would stand to be more free of getting such illnesses.

Yet, look at the flu... it appears to mutate every flu season, and we stand fighting not just against one or two strains, but 3, 4 or more strain of flu, of pneumonia, and we find that we get a vaccine in place that may work for years, and once those viral or bacterial diseases "mutate" the vaccines we have may be useless to fight them.

So, give heart today for it being World Health Day! Think about our communities, and how we try and live as cleanly and "germ free" as possible. Then we can step into a doctors office, or a hospital, or just grab a basket at the local supermarket, and pick up all types of illnesses just by touching a handle where someone else ill has just touched it.... we have so many diseases that are airborne and are extremely contagious, that just being in the room with someone can cause you to become ill, even through hand washing and antibacterial hand wipes and so forth.


As our world continues to grow LARGER, yet we BECOME EVER CLOSER with our modes of transportation today, we become more susceptible to all types of diseases we may not even know or have a name for yet.


We can help to fight some of these off by trying to stay "healthy" as possible ourselves. Getting proper daily nutrition, getting some exercise daily or several times weekly, making sure we get enough sleep, trying to lower our stress levels, doing things to keep us from possibly catching some illnesses like the flu by having the vaccine, by washing our hands often, or grab one of those hand wipes at the store and wipe off the handle of your basket, and take time to be aware of symptoms of "sick people" who are sneezing, or show signs of not feeling well, and educating ourselves on the ways we can try and fight diabetes, cancer, heart disease, and other illnesses that we can try and prevent by doing a few smart things...

Most of all, try and add some "fun", laughter into your day. Whether it is petting your dog or cat, playing with your kids, having a good healthy dinner around the table with family all together, talking about your feelings, telling your physician about sudden new symptoms, there are ways we can try and remain as healthy and have as wonderful of a life as possible....


#HappyWorldHealthDay!


As I was writing this in my blog, I had thought about small things we sometimes take for granted, like changing out our toothbrushes often, or our sponges or towels we use in the kitchen, or I know for me, I put out a new "shower net" or whatever you want to call the shower netted balls... quite often ... wiping down things such as your keyboard, or remote controls for your home appliances, and at work as well, keyboards, phones, your desk, all places we may not think of but germs can lurk easily. Even for women our makeup. We should take heed of the advice of the experts and not keep foundations, eye shadows, mascara's and all of those types of things for too long without replacing them. My towel in my bathroom, I change sometimes twice weekly, especially in warm weather. Although I am sure there are things I forget or do not think about as much as I should, even wiping off my handles on the fridge, microwave,sink faucets, and oven, and knobs, I try and remember to do frequently.... I know as bad and humid as our summers are in TX, I also run bleach through my washer often with warm water, to clean out all of the mold or whatever maybe hiding, and it helps to keep tree roots from clogging your pipes I found out from a plumber that came out for me... I was having heck with a clog, and he said here that tree roots even through the pipes you would never think that they could get through can eventually the tiny pieces get into those pipes in the ground and cause clogs... so he recommended that I buy a cheap bottle of bleach about once a month, and pour some down my drains, and toliet, then I can get to my "cleanout" easy, and open it and pour the rest down into it... that would help to rid those tree roots from clogging my pipes.... anyway, we are all living in a "too busy" world... I know mine is, I feel I barely have to time breathe some days... but some of these "little things" could keep us from becoming HUGELY ILL!!!!

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

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.....

May The True Meaning of Easter Bring Faith, Hope, and a Renewed Spirit to you in Celebration of that Stone Rolled Away.....

As we reflect on the true meaning of Easter Sunday, and all of the hope, faith and trust it represents to those who believe, I bid you love, peace within and without, and the joy that the "stone" was rolled away in 3 days. Our very reason for this blessed celebration. We too have our own "stone's that shall be rolled away" and we have that gift of being set free one fine day from all of the pain, hurt, conflict, and what our "human kind" brings... and shall be in a new and glorious body, and where as "Our Father" promised will walk on the streets of gold, and share everything good in that land far away. May you find all of that peace and comfort this Easter Weekend, and walk in a new light knowing in your heart that you too will be set free from our hurt, pain and suffering...

Our world has become such a place of horror, too judgemental, too oppressed again, too full of hate, of cruelty, with lack of respect for any "life". We have so many that lack any type of morality when it comes to the very sanctity of what human life means. Our world has become a place that many of us feel terror, rather than feel freedom to be and do what we feel our lives are here for.... Even though we try and walk in the light knowing none of what here will matter someday, it is difficult NOT to be frightened each day of what some of these hate mongers may do....  

#meaningofEaster  

#stonerolledaway

#Dad2005

So, with hope and a place of peace inside I wish you an Easter filled with all things good... Rhia  

By the way my other thought for tomorrow....

Easter Sunday 2005, was the day my Dad passed away. This is a photo of some of my family at the cemetery. I felt this was an appropriate time to share this once again. Oddly enough, that particular Easter also fell on March 27th, 2005. Miss you and Love you Dad! I know that You and all of the family, along with Tazzy, friends and others await there with open arms for all of us. As much as I wished you were still here, honestly, you are in such a better place. I am thankful that you are not suffering, and  you are not suffering, nor having to witness all of the horrid things of this Earth now.... Love you, "Pammy"