RARE DISEASE DAY 2018- - Raise Your Hand and Post this to help raise awareness and make a donation for a $1.00 for each click on this

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The "News" and how they TWIST INFORMATION THAT HARMS PAIN PATIENTS AND OTHERS!!!!!

I got SO PISSED AT THE NEWS LAST NIGHT, I COULD HAVE SPIT!!!

They started NOW on the "Non-Profit" Pain Organizations taking "kickbacks" as "donations" from some of the big "Pharma" companies that make the heavy narcotic pain meds... BUT RATHER THAN TELL IT LIKE IT IS, THEY "PIECED" TOGETHER what "they" wanted to make it mean, I was so mad I wanted to jerk Lester Holt through the TV and slap him LOL....

it is stupid, it would be NO different than a Pharmaceutical company that makes "cancer" meds, or "diabetes" meds giving money to non-profits... to help "educate" patients, to give information out to assist patients about medications etc that DOES NOT MEAN A NON-PROFIT IS "GIVING PRAISE" ETC to "any one" drug company, it means that they could be "working" together for a common goal, to help legitimate patients get the treatment they need, and keep it out of the hands of those who use it illegally, sell it and so forth...

then to top it off, they said there is "one doctor" who gave out "1,000" pain pills in a day!!! WELL, THINK ABOUT IT, IF A PAIN SPECIALIST SEES 25 PATIENTS A DAY OR WHATEVER, some having procedures, some having surgeries, many on different meds, and they see 10 PATIENTS IN A DAY, THAT NEED REFILLS FOR 30 DAYS OF MEDICATION... if a patient take 1 PILL every 6 HOURS a day, that is 4 pills a day times 30 DAYS IN A MONTH, THAT IS 120 PILLS ... WELL IF 10 PATIENTS NEED REFILLS THAT IS 1200 PILLS BUT IT IS FOR 10 PATIENTS FOR 30 DAY SUPPLIES!!!!!! NOT 1200 PILLS ALL AT ONCE FOR ONE PATIENT!!!! OMG! I was SO PISSED, IT IS RIDICULOUS THAT THE NEWS PIECES TOGETHER WHAT GIVES THEM RATINGS! and harms others!!!!!

No matter what the subject is now days, the news takes it tosses it like a salad and then comes up with how they want it to sound for their own gain!!!! THAT IS why I don't believe much of anything they say now days, and in fact rarely really "listen" or watch the news channels!!! They are the ones that bring forth some of the issues in society we have today. Their very "way" of twisting "their truths" to suit their own status and ratings.... People should be standing up and hey we will not put up with, listen to, nor watch the garbage you guys spew out anymore!!!!

HAPPY VALENTINE'S DAY TO ALL MY DEAR FRIENDS NEAR AND FAR!!!!

May Each of You Find and Share the Love of your Lifetime with Your Soulmate... the one person who keeps you close to their heart no matter what, who loves unconditionally, who respects you, who shows you how proud they are of you.... that honors the "bonds" you have made with one another, and when you look into their eyes, you KNOW you are truly and forever loved beyond all words....
Happy Valentine's Day!!!!

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An Article in "Mad in America" Stopping the WAR on Chronic Pain Patients

Stop The War On Chronic Pain Patients

Here is the 1st paragraph of the article....  "

Readers of Mad in America are deeply familiar with the tangles of public policy which surround voluntary or compelled interventions with psycho-active drugs in people who are experiencing life crisis. Some readers will also be familiar with a different kind of crisis and its policy tangles, in the difficulty which many people encounter getting medical assistance for chronic intractable pain."

https://www.madinamerica.com/2016/05/stop-the-war-on-chronic-pain-patients/

Xeljanz Rheumatoid Arthritis, Lupus & the "latest in treatments and medications"... The Horrid Flu Season, & A New Year

I want to wish everyone once again a Happy Beginning to 2018! I cannot fathom that we are already moving into February! It was like yesterday, the holidays were here.

Now, we move on to the "flu season" which has been a nightmare to say the least!

I've spent well over 6 weeks "sick" but not really with the flu. Mine I feel had began as both an RA and a Lupus flare, both severe. I had not been feeling well since before Christmas, but I put off going to my doctor's or to Urgent Care. It was the holidays, it was everyone beginning to be ill with the flu (viruses)... and at that time they were just beginning to see that the "flu" strains which are several, were not all covered by our vaccine.

I had gotten my fly vaccine back in September. I happened to be in my PCP's office for a follow up and they had gotten theirs in, so I went ahead and got mine. Being one of the hundred's of thousands with the screwed up immune system, between the autoimmune illnesses, and the medications that also contribute to our systems being weakened, I've been taking the flu and pneumonia vaccines, when I need them. I had the flu about 10 years ago and was ill for a month. In fact it was just after the Christmas Holiday, at the time I was a manager for a retail women's clothing store. I passed out almost while at work, and my daughter had to drive me to the ER across town. And I had the flu. Of course that was the worst time for me to be ill, due to that job. With all of the after holiday sales, and inventory time, I was sick for a month, and lost the job. Other things beyond my control also did not help, but it really hit me hard.

Then while in Seattle, I had gotten not only double pneumonia, but also the whooping cough at the same time. Again, in fact, it was the 1st day of a brand new job I was headed to, I got so ill in the car, I had to turn around and go back to my apartment. I called in and told them I was so ill, and went to an Urgent Care down the road. They wanted me to be admitted to the hospital. but, at the time, I was supposed to start a new job, was in the process of moving, and going into a whole new "life and career" at the time. The irony to the entire thing is when I had interviewed for the job, both "bosses" were SICK! They had been coughing, sounded terrible, and although I sat WAY on the other side of the table, I honestly think I got sick during the interview, or was exposed.

After 10 days and two trips for shots, cough meds, and antibiotics, and then a lingering cough for a month, I got "better", went to work, moved into my new apartment, and was settling in to the new life style.

So, the "flu" and "pneumonia" are two things I prefer to stay away from if at all possible. Yet, I've had pneumonia a couple of times since, even with the vaccines. So, it can happen.

My RA has been really worse over the past 8 to 10 months. We changed me over to Actemra, from Enbrel. But, after 6 months I am still showing signs of active RA especially in my fingers, wrists, and ankles, and some in my hips.

I felt when they took me off of the Methotrexate, due to infections, that is when I began to have a more severe action of the RA. I had asked if we could try the MTX again, but they just didn't want to chance it. I had mentioned "Xeljanz" before, but at the time we were just beginning the Actemra, so the wanted to wait.

I shall continue this either later today or tomorrow....

Diatomaceous Earth, "Alkaline Water" "Life Water" and the body, houseplants, our "Fur babies" and more...

Since the subject of "Life Water" or I think it is an "Alkaline Water" if I am correct, I wanted to raise the issue over" how long does a complete detox take with diatomaceous earth?" YOU MUST use "Food Grade" or I would for sure, if you are going to take this for a supplement, or if you are using it in your home on pets for flea control and so forth.

I know I had it out around the house before winter, and up until now our weather is beginning to show some "signs" of spring, like I saw a HUGE HAWK, right here in almost downtown Ennis on Friday afternoon. It flew down into my trees in the front, and I sat and watched it with a "wandering mind" as to "why" I believe after looking it up, it was a "female" she was doing "here" almost in the middle of town. We have LOTS of trees in our neighborhoods and the birds are just like a jungle all through early spring through summer and late fall... I've even already seen a red headed woodpecker in my front tree also, plus I've heard the wrens out some, so when I begin to hear birds again, I know "hopefully" our main very bitter cold weather is coming to a close, or I PRAY it is... don't get me wrong WE NEEDED A BITTER BELOW FREEZING COLD, THIS YEAR! We have basically NOT HAD a "winter" type weather here now for at least 3 years maybe more... of course it's been cold, but not where it was way below freezing, and lasted for a week or more, several times in the winter months. And believe me you can always tell, before spring even gets here every kind of a "bug" comes out, if we have no really COLD winter...

so I PRAY we have had enough at least to kill off some of the damned bugs that are driving me nuts, fire ants have been horrible, fleas I pretty well had hold of, but I was very, very well prepared, and even then sometimes they are bad, but other ants, every kind of a "kissing bug" or what I call a "stink bug" and they were horrible just before it got cold this year... they were everywhere, and they can be very bad if some of the ones that "sting" bite you... it can make a human or a dog or cat sick... they are nothing to be messed with from what I've read, but the gnats, the ants, the spiders, you name it, I actually put out the stuff I use on my lawn very early the past 2 or 3 springs, and usually I "may" have to do it one more time mid-summer, but this past year, I put it out at least 3 times, and actually before it finally got cold, I put it out again... and that usually never happens... anyway, so hopefully we had "enough" to kill out the bad bugs and critters, but we are now hopefully going to "get out of that bitter cold" that has just about put me under with the severity of pain, and how badly it's effected my Lupus, RA, and autoimmune illnesses and chronic pain.. I went well over a month and usually I have a "Lupus flare" but the RA is mainly the "same" all the time, not this past few months, the RA has been totally out of control, and even the huge prednisone doses and the huge injection of corticosteroids really did not rid me of either flare...

I got somewhat "better" but unlike most of the time, I never really got over either one... so that is why I am going on "Zeljanx" that is AFTER WE GET THE INSURANCE TO PAY HOPEFULLY OR I MAY HAVE TO HAVE THEM PAY AND IF MY CO PAY IS TOO HIGH THEN THEIR PHARMA COMPANY WILL HELP ME WITH THE BALANCE... I've already "applied" for their patient program, so I will have that much done, just in case the insurance company decides to give me hell about it.... I really should have gone to Urgent Care this weekend, or yesterday, they are not open here on Sundays right now... I "think" I am dealing with a sinus infection, that is what is causing my nasal passages to be bleeding, and they continue to be almost scabbed over and hurt like hell... I try to leave it alone, but it hurts so much I have to put lotion or cream, or vaseline on a cotton swab. and rub both of them down. They are so "tight" from being dried out also... but I've been messing with it now again for weeks, and keep putting it off... as I said on Friday, I "feel too bad" to even take myself to Urgent Care...

Anyway, now I am suddenly fighting gnats! They have not been in my houseplants all winter, and this past couple of days ago, when I watered, now I am dealing with those again, which means my fresh garlic is "fizzled out" and I think as usual no matter how much I clean my kitchen drain or with what they like to "hatch" down deep in the drains then fly out and get in everything... I've been seeing them even in one of my closets... so I put out some of the "diatomaceous earth" and that will also help to rid my plants of them, and put out some "lemongrass oil" around the tops of the planters, a mixture of that with Tea Tree Oil usually will get rid of them also.... so the one thing I don't "cherish" about spring coming is the damned critters flying around...

diatomaceous earth, alkaline water, "Life Water".... supplements, Lupus flare, RA Flare, spring, summer, critters, ants, gnats, TX and living with Autoimmune Illnesses....

Arthritis Foundation and Washington DC March 2018!

It's Time to be United! In the Fight Against this horrific life altering diseases

It is almost here! Another year gone by and time to get to Washington DC with the Arthritis Foundation to get on the bandwagon and get the House of Representatives off their "kiesters" and on up to getting a Cure for RA, Osteoarthritis, and all the many other diseases that an be "packaged" into these... we keep hearing more and more about "pain" and now this "opioid crisis"... 

If there was a "cure" or a way to "regenerate" the damage that so many of this horrid illnesses cause some would NOT NEED pain medications!!!

So, those who get to go, tell them YOUR story, your children's stories, or whomever you are there to represent!

New Lupus Possible Treatment - Lupus Research Alliance Article

Lupus Research Turns Immune System Enemies into Friends

https://www.lupusresearch.org/lupus-researcher-turns-autoimmunity-causing-antibodies-from-foe-to-friend/
I found this article extremely interesting and a "brand new way" to treat Lupus. I hope you get some great information out of it also. I am always looking for "new treatments" other than the ones we already know about. Hoping someday that someone either finds a cure, stops this horrid illness all together, or at least makes it a bit more "bearable" to live with.... this starts with Intravenous immunoglobulin (IVIG), and from there if you are like myself, although I knew "some" about this, I delved into more research about this particular type of possible treatment...

SEVERE SYMPTOMS many and My Own Delve into Babesia, Chronic Lyme, Co-Infections from Lyme, Cat Scratch Fever, Drenching cold sweats

I have thought about it since I got up once again at 3:30AM, which is better than 2:30 the past couple of days... and while I was watching TV and then went to do a couple of things in the kitchen, (and the weather is extremely WINDY AND COLD, TEMPS ARE AT 25 THIS MORNING AGAIN)...

I given MUCH thought to "all" of these "symptoms" that I've been having. I had even bought one of the "smart bands" that keep up mainly with my "heart rate"... since it is so bad about being "low" if I take my Metoprolol that I take for the "extra beat", they think it reduces my heart rate, and then that is what causes the SEVERE cold, drenching clothes, shivering sweats, of which NOW I've had two of them so BAD, yesterday and both during the day time this time, which is odd, usually they happen at night, that my hair, my clothes, a jacket I wear inside if it's cool and my huge robe was "soaking" wet.

I am totally drenched when I have some of them that get bad.... anyway, it "makes sense" that my body "reacts" with that "type of sweat" to get my heart rate to increase, thus why I am even giving thought to a pacemaker. Which they are so tiny now days, the ONLY thing is once I have one, then it is THERE for the rest of my life. I won't be able to "take it out" someday and not have one. My Cardiologist and I talked about it when I saw her a couple of months ago, and she gave me information, plus Lourdes Villegas Anaya has one so she has talked to me about hers, and I've of course researched them myself. "If" that is a portion of the problem, and then after wearing this band the past 3 days, today will be day 4, I can "see" anytime what my heart rate, steps, if I walk, run, (never will happen that I run -LOL BEFORE I ever had joint problems etc,

I was never a "runner") anyway, you get the message... I've noticed that my heart rate tends to be "erratic" ... just in general. And I am going to look into it more today, because what I am "seeing" could be "normal"... I just thought it was "off" yesterday BUT I was in one of those horrid, nightmare of a cold sweat for hours and hours yesterday...

I was still not so sure, with the way I feel that maybe I do have the flu in some way... anyway, I wanted to do some looking into the "multiple" symptoms I've had especially over the past about 6 weeks, with the EXTREME PAIN, in my joints, muscles, the severe headache, and even though I had the injection and then now I am still on the step down of Prednisone, that I go today to 2 pills for the next 2 days... so I've done 4 for 3 days, 3 for 3 days, now 2 for two days, then 1 for two days, then to a half for 2 days.... yet, the pain was so bad after about the 5th day after the injection, so I had it a week ago today, and over last weekend I felt "better"... then it hit me late Monday evening, and then Tuesday and Wednesday,

I was ready to sit in the floor cry, scream, the pain was just horrendous. It was my legs, into my hips, it was my shoulders, especially the right one, my neck, which worries me because I have to wonder if I don't have a "failed cervical neck surgery" or another disc fractured or something... The problem is there is so many "symptoms" and then there are the "medications" to take into consideration.... ONE of my ideas is that the "Acterma" for the RA

I started about in September is NOT working as well, due to I am not on Methotrexate anymore. They took me off of it, about maybe even a year ago or more, because of the severity of the infections, especially when I developed the "cellulitis" in both top thighs, and it abscessed and i went to wound care for over 6 weeks in DALLAS every week, to have those "debrided" and redone.... I thought they would NEVER get well and I still have almost like a quarter sized scar/a bit of an indention on both thighs where those were.

Here is more information and more thoughts on some of the things I found from a search of symptoms and so forth...

 Well I have to say, even after a "short" research into my "symptoms" and by the way MY PCP HAS THE FLU! I called about a prescription that had not been getting to them from the pharmacy and found out he is sick with the flu... anyway, MY BEST Friend from Grade School and now my "Vet" told me about "symptoms" and all of the issues I had, and I looked up "Bartonella" which is now also associated with another "chronic health issue" that is an off set of "Chronic Lyme Disease" called Babesiosis - Babesia (which as far as I "know" I don't think I've ever been bitten by a tick, and never had any on my pups unless it was way back in the 1990's when I lived in Blooming Grove and the pups may have one on them once or twice, or when Dad hunted deer, he would get a tick on him every great while, but I have been BITTEN BY A CAT, IN FACT MY OWN CAT, in 2005 when I was in San Pedro, and it was a severe bite... he did it not because he "wanted to"... I lived in a 2 floor - 4 apartment type of place there, and they were putting new screens on the windows, this was on the top floor where mine was, and they didn't tell me they had the screens off, I had been out walking, when I came back one of my cats, was falling out the window!D I heard him and went of course to try and catch him and of course he was scared to death - and he bit the literal HELL out of my hand... it "pierced" the skin almost all the way through, and it hurt for DAYS! I went to the ER twice and I had just moved there so I knew nothing about doctors etc there at the time, anyway, I was on antibiotics, got a tetanus shot, and had pain meds for 10 days or more, it was at Thanksgiving and I could not even stand up to do anything, I was in so much pain, and bless the cat's heart, he was "never the same"... I "think" he knew he "hurt" me so he was always kind of almost frightened he would harm me again, or thought I was "mad" at him... even though I was not, but of course it was stupid me that went to help him, a natural reaction for anyone with a cat, dog etc... but the "Bartonella" can come from "cat scratch fever" which of course I knew about... so now I have to wonder, although I had "symptoms" of some degree before this happened, if she has really "hit" the nail on the head.... I think I will pull some information, and take it with me to see my Rheumatologist and my PCP the last week of the month, and see what they have to say... so Venetia Shafer I KNEW you had a great point back when we talked about this before, but with the symptoms so much worse now than ever, I have to wonder if it has something to do with that or one of the 'RELATED" TO ONE OF THESE TYPES OF ILLNESSES...


http://www.lyme-symptoms.com/CoInfectionsBartonellas.html#Bart