FFA approves Medication for our Pediatric Patients which is terrific news for them!

Great News from the FDA for our Younger Lupus Patients (first ever pediatric patients!)!

http://www.worldpharmanews.com/fda/4803-fda-approves-first-treatment-for-pediatric-patients-with-lupus

Often we may let it slip our minds we havee many "very young patients" with Lupus. Up until now it was extremely difficult to help treat them! 

EYE Exam when on Plaquenil to check for Macular Degeneration, Weather,Bursitis,Lumbar Spine problems, & Spring Weather bringing the insects

Eye Exam, Spring time Weather brings in the "insects", Hip Bursitis, Lumbar Spine causing pain, & the "catch-up" game on Doctor Visits

WELL, I got the EYE EXAM over with..finally yesterday... and no signs of macular degeneration or anything caused from some of my medications, especially the Plaquenil... although my vision had "gotten worse" so I did need new glasses, which I knew I would. And usually I am not thrilled with glasses, BUT I can't wait to get these in and take a pic n them... they are totally "different" in several ways than my last two pair... as far as looks etc... it will be probably 10 days, (I hope less) but with the "prisms" in the for the double vision, they take longer to make. So, I can "check" that one off the LONG LIST of DOCTORS, follow ups, etc...

 I was really past due. I am supposed to have an eye exam for the macular degeneration ANNUALLY! And I know it's been at least 3 years...between Mom passing away, then the hip fractures, and the neck surgeries, and all of the other 100 things in life that goes on for most of us, it took me that long to finally just say "you have to do this" and get it done. So, now I have an Echocardiogram next Tuesday. It's been a couple of years since my last one, and before they put in the pacemaker my Cardiologist wanted it done, which I hate only because you have to lay on one side, and be still at times while the tech takes pics, and so forth.. and it's just not comfortable for e to lay on that side... with my hips especially right now still hurting so badly from the bursitis (and whatever else is going on) I am NOT CONVINCED that "hip bursitis" is the only thing causing so much pain in both hips... MY FEAR honestly is that something has happened again with my lumbar spine... either a compression fracture, due to the osteoporosis, or a disc or two "gone" like in my neck, or something to do with my lower spine causing this much pain for as long as it's gone on now... 

I WANT to continue to BLAME IT on the "weather" and I know that it is part of why the pain is so bad, BUT.. it hurts to stand, to sit, to walk.... even just driving to Waxahachie to the eye doctor yesterday, made my hips and upper legs have such a deep ache... and it is only like 15 miles over there. So, I am not driving for that long. But going to Dallas to the doctor's up there does the same thing... yet if I try to stand in one spot, or at times just walk through Wally World or the market etc... it does the same thing... it is so frustrating... and my pain specialist ordered a CT Scan, I have the order, BUT I have had to see all of the other doctors etc... and besides I know the co-pay on a damned CT Scan is HIGH, besides, I still owe a little to the hospital for the Endoscopy from that CO-pay. The I will owe another one when the pacemaker is placed. Each time I see a specialist my co-pay is 35.00. That does not sound bad at all, 

I know BUT when you go to about 5 or 6 in less than a month, it adds up!!!! Plus I have not been back for my follow up with my Rheumy but I JUST now got the lab work results he wanted. So I knew there was no reason to make a trip until I knew for sure all of those were in and that they sent them to him. I still face also going to my "other" Orthopedic Specialist... the one that did my complete shoulder replacement and both neck surgeries.. once the CT Scan is done.. again though until I have that scan and the results there is no reason to make a trip to see him. That is why my pain doctor ordered the CT Scan.

He knew that it would be the 1st thing that my Ortho. Doc want of my lumbar spine. 
AND so goes, it's going to be so muddy, and now it shows we have a possibility after a beautiful weekend, of then from next Tuesday for at least 10 DAYS of THUNDERSTORMS everyday!!!! So, if I don't get some of this stuff done in the yard over the weekend, I may be having weeds taller than me in places... plus my I am overtaken by ANTS! Several kinds but I have put down everything and they keep "moving" .. these worry me because they are n the outside of at least half my house, I bought some "ant block" that is made to put around the foundation of the house... although I have already put down even the "Bayer" one all over the yard twice and they still are giving me the blues... OLO! they hate coffee grounds though...they are in one of the brick columns on my front porch, and it has enough space on it, I can spread the coffee grounds all around it, and it drives them nuts, they won't cross it so then of course they MOVE and find another way dammit.... but after almost "no winter weather" then ALL of the rains for so long... and an early spring I fear just like weeds and pollen we are going to be covered up in all kinds of "bugs".... here come the fire ants... I've already had a couple of beds of those... 

So, if it's not ONE thing, then it's something else... I know I am "griping" but I also realize I AM NOT THE ONLY PERSON with all this mess going on in life... so I feel for all of you also... then the news talks about how "stressed" as a nation we are... well no wonder.....

A NEW BLOOD TEST for FIBROMYALGIA! The article says it's 99% ACCURATE!

A NEW BLOOD TEST for FIBROMYALGIA! and it says to be 99% ACCURATE!

I know MANY of you that will be glad to hear this one... they are now saying they have a "blood test" that ia supposed to be 99% ACCURATE in determining whether you have FIBROMYALGIA!!!! NOT that anyone WANTS to hear that they do, BUT for so many years, especially WOMEN have been led to believe it was "all in our heads", or we were too "stressed" or "depressed" or, or ... whatever type of "so called diagnosis"... just to get them "satisfied"... 

I went through this years ago.. when I have the Migraines so badly they would send me to the ER - at times 3 or more times a month! I went to every "known specialist", every medication, from antidepressants, that didn't do a thing buy make me tired and worse.  I went through injections into my spinal fluid, into my "occipital nerves" at the base my neck, the "Imitrex" that I had severe side effects from, and come to find out, those medications I should have never been given due to my heart... I was even given "Thorazine" and the worst was that is given for "bi-polar" disorder, and it built up "toxins in my blood". One day at work, (when I worked in fact at the hospital in Corsicana in the business office - between 1990 to 1996... and I was with a patient at my desk and suddenly, I began "talking about all kinds of things" and had no clue why? I started talking about "bathing suits", and I "knew" something was very wrong.. I accused myself, and honestly thought I was having a stroke, and went down to the ER only to find the "Lithium" was building up so high in my blood stream, 

It was causing me to hallucinate,... then of course therapists, psychologists... even "bio-feedback"  and they even put me as an inpatient at the hospital for 3 days to give me some medication like Imitrex that is a vasoconstrictor.. and it was that "dangerous" I had to be in the hospital and wear a heart monitor while they gave me this medication by IV... t was totally insane what I went through between the mid 80's even until 1999 or so. And as I said come to find out several of those medications I should HAVE NEVER been given. I had my 1st heart attack at 40 in 2000.... not all that long after all of those things took place. Yet for DECADES like you hear many especially women say, if they had tested me further for RA, Lupus, and other types of autoimmune illnesses, 

I believe they would have found the Lupus, which causes severe Migraines and that only thing that helps a Lupus Migraine for me is an injection of corticosteroids, to bring down the inflammation... although a Lupus Migraine is different than other types, which for years from the time I was 17 I had developed "Migraines"... so now that I am off on that tangent...(this article struck a nerve with me since Fibromyalgia was one of the "junk diagnosis" as some call them that doctors gave us when they could not "find anything else wrong" it was ONE of the many I was given and back then honestly, doctors had no clue what it was, just a at the time "rare mysterious illness" that had popped up at the very 1st I believe in Colorado. I will have to verify that, but a small town there "suddenly" had many of it's long time "well" residents suddenly come down with this list of symptoms" and it put many of them in bed, they had to quit their jobs, and it was really a nightmare... d to be 99% ACCURATE in determining whether you have FIBROMYALGIA!!!! NOT that anyone WANTS to hear that they do, BUT for so many years, especially WOMEN have been led to believe it was "all in our heads", or we were too "stressed" or "depressed" or, or ... whatever type of "so called diagnosis"... just to get them "satisfied"...

 I went through this years ago.. when I have the Migraines so badly they would send me to the ER - at times 3 or more times a month! I went to every "known specialist", every medication, from antidepressants, that didn't do a thing buy make me tired and worse.  I went through injections into my spinal fluid, into my "occipital nerves" at the base my neck, the "Imitrex" that I had severe side effects from, and come to find out, those medications I should have never been given due to my heart... I was even given "Thorazine" and the worst was that is given for "bi-polar" disorder, and it built up "toxins in my blood". One day at work, (when I worked in fact at the hospital in Corsicana in the business office - between 1990 to 1996... and I was with a patient at my desk and suddenly,

 I began "talking about all kinds of things" and had no clue why? I started talking about "bathing suits", and I "knew" something was very wrong.. I accused myself, and honestly thought I was having a stroke, and went down to the ER only to find the "Lithium" was building up so high in my blood stream, t was causing me to hallucinate,... then of course therapists, psychologists... even "bio-feedback"  and they even put me as an inpatient at the hospital for 3 days to give me some medication like Imitrex that is a vasoconstrictor.. and it was that "dangerous" I had to be in the hospital and wear a heart monitor while they gave me this medication by IV... It was totally insane what I went through between the mid 80's even until 1999 or so.

And as I said come to find out several of those medications I should HAVE NEVER been given. I had my 1st heart attack at 40 in 2000.... not all that long after all of those things took place. Yet for DECADES like you hear many especially women say, if they had tested me further for RA, Lupus, and other types of autoimmune illnesses, I believe they would have found the Lupus, which causes severe Migraines and that only thing that helps a Lupus Migraine for me is an injection of corticosteroids, to bring down the inflammation... although a Lupus Migraine is different than other types, which for years from the time I was 17 I had developed "Migraines"... so now that I am off on that tangent...(this article struck a nerve with me since Fibromyalgia was one of the "junk diagnosis" as some call them that doctors gave us when they could not "find anything else wrong" it was ONE of the many I was given and back then honestly, doctors had no clue what it was, just a at the time "rare mysterious illness" that had popped up at the very 1st I believe in Colorado.

I will have to verify that, but a small town there "suddenly" had many of it's long time "well" residents suddenly come down with this list of symptoms" and it put many of them in bed, they had to quit their jobs, and it was really a nightmare... NOW they have came a very long way in getting to the bottom of this still kind of mysterious host of symptoms, that can often mimic other types of chronic illnesses.

So here is the URL: https://stayfit247.info/2019/04/24/the-new-fibromialgia-blood-test-is-99-exact/

article on https://stayfit247.info/

"Pet Therapy and "Chronic Pain" - Our Fur Babies often are what keep up moving, when we really want to give up....

Pet Therapy and Chronic Pain... 

https://www.mychronicpainteam.com/resources/pet-therapy-and-chronic-pain

Pets can be mysteriously loving and accepting companions while we live with chronic pain. Pets can be intuitive, gentle, and comforting on bad pain days.... read more from the link above from "My Chronic Pain Team"...

(Open Letter) signed by over 300 pain specialists, other physicians and those in the medical profession to the CDC & how their "Guidelines" on Opioid Medication could drive Chronic Pain Patients to Suicide...

Are Federal Guidelines for Prescribing Opioids Hurting Patients with Chronic Pain?

(Open Letter) signed by over 300 pain specialists, other physicians and those in the medical profession to the CDC & how their "Guidelines" on Opioid Medication could drive Chronic Pain Patients to Suicide... (letter URL below)

https://docs.google.com/document/d/1RzQDSppUKhjiAsEmhW2WbTXlP5V8vJ4M_vBPQLKhK_8/edit

Information comes from the links here....
www.democracynow.org 
https://www.democracynow.org/2019/3/27/are_federal_guidelines_for_prescribing_opioids


For many years my Mom would ask me "How did I stand the severe pain of Migraines at first, then later, Lupus, RA, Joint issues that turned into replacements, and all of the severe chronic pain she watched me have to go through... she told me several times, that there was no way, she could endure what she watched me go through, that she would have possibly committed suicide rather than put up with all I had to go through so many years BEFORE I could get some "real help" after searching for a decade or more for physicians, diagnosis, medications and things to help me not have to live with such horrid pain in my life.... 

I always tried to reassure her that things would someday "get better"... and yet here we stand worse off than a decade ago when it comes to severe chronic pain... 

Wednesday’s Addition of My Daily Newspaper “ Autoimmune Arthritic Systemic Life”

Wednesday’s Addition of My Daily Newspaper “ Autoimmune Arthritic Systemic Life”

http://news.autoimmunearthriticsystemiclife.com/#/

One of the Featured Stories 

https://pres5.com/women-and-arthritis/

Women and Arthritis  

 

Arthritis affects people of all ages. Diagnosis of most forms of arthritis occurs between the ages of 40 and 60 years old. The rates of arthritis are three times higher in women than in men.

The disease is characterized by chronic joint inflammation. Stiff joints with limited mobility and pain are common symptoms of the disease.

Over 100 forms of arthritis are recognized with three of them being the most common: rheumatoid arthritis, osteoarthritis, and psoriatic arthritis... (see URL for rest of article)...  

Pacemaker Placement, Hip Bursitis both hips severe, shoulder surgery & fear of brachial plexus issues (after reverse shoulder surgery about 5 years ago)

I had my consultation yesterday with my Cardiologist about the Holter Monitor and the low heart rate about 17 hours a day... we DID decide to go ahead with the pacemaker... everyone and everything I've read, talked to etc... even a couple of my other doctors feel it's a good idea, and "may help" some of the fatigue, the weakness in my legs, even the spider veins in my ankles, plus give me back more energy that I seem to be "losing" in the past year or so... I just can't seem to be able to keep up with the house, going to the market, and just days in general. Even though I am up and around, I seem to just be so "slow" and feel like I run out of energy much sooner that things to do... 

NOW I KNOW that some of that is the RA, the Lupus, "age" of course, the chronic pain and so forth, and there are no "guarantees" how much the pacemaker will help, but I feel it will give me back some of what I seem to have lost as far as stamina, especially outside doing my yard, flowers, and I so love being outside when the weather is nice (by the way I drove through the Cemetery yesterday and those HUGE OAK trees that looked like they just completely died that are in a row of about 10 where my Mom and Dad's graves are, THEY ARE COMING BACK OUT!!! 

I was so thrilled to see them leafing out..I think when they were building all of the new apartments right next to there, they must have "sprayed" something or did something to really knock them down hard, so when I saw each one slowly but surely with the new growth on them, I knew my Dad was happy... that is why they picked that site... Dad always loved trees, lawn work, gardening and so forth... anyway, I think wrote that I got the left hip injected Monday, and even though I have to wait (this Orthopedic doctor) won't inject them at the same time and then he makes me wait three weeks before I have the right one done... which sucks... it would be better for me to have it closer together to SO HIPS are better at the same time. But I know due to injecting the joints with corticosteroids they like to be cautious.... 

I go to the eye doctor tomorrow, I am really "past due" since I take Plaquenil, and it can cause Macular Degeneration... & I usually go yearly and I've missed I think almost 2 years..jus due to everything else, it seems I never can find the time plus I can "check them at home and do frequently with a special chart I look at. But the double vision and my vision in general has also changed again... so I "may" need new lens and HOPE NOT! All of these doctor co-pays, and then the Outpatient charge for anything I have done like the Endoscopy and now the Pacemaker, have a larger co-pay now... and of course the hospital always wants is ALL up front.... and hell my glasses if I need new lenses, the "prism" in the for the double vision makes them cost even more...plus I got ready to make the eye appt and found out my "usual" eye doctor retired! 

Luckily, I had been to another one last time, and I really liked him... and he is close, just over in Waxahachie, so at least it's not Dallas. But, I went to make the Endocrinologist appt that my PCP wanted me to see, and SHE CAN'T SEE MY TILL LIKE THE END OF JULY!!! So, I found a couple that take my insurance and they are closer to me, although still in Dallas not as far as this other woman... but I've got to get everything else "caught up"... I have to see my other Orthopedic Surgeon since we think my lumbar spine is causing a lot of my severe pain also in my hips and down my legs, plus the shoulder he replaced... it's not been "the same" and feels almost like that "brachial plexus" ball of nerves, are on fire...I can't stand to "touch my right shoulder" in many places..it was never "the greatest" but was so much better after the replacement BUT after that 2nd cervical neck surgery, (I know they had to have me lying in a very odd position) they must have had that shoulder in a position, that ever since, something is just wrong.... so he is the one that does the spinal surgeries, the shoulder replacement and so forth...

Pain Patients Get Relief from Results Positive from on Opioids from U.S. Agencies!

Pain Patients Get Relief from Results Positive from  on Opioids from U.S. Agencies!

from the Scientific American

https://www.scientificamerican.com/article/pain-patients-get-relief-from-war-on-opioids/

By Claudia Wallis on April 19, 2019

Ever since U.S. health authorities began cracking down on opioid prescriptions about five years ago, one vulnerable group has suffered serious collateral damage: the approximately 18 million Americans who have been taking opioids to manage their chronic pain. .... Red rest of article on link above...

© 2019 SCIENTIFIC AMERICAN, A DIVISION OF SPRINGER NATURE AMERICA, INC.

SEVERE CHRONIC PAIN & BEYOND SERIOUS WEATHER POTENTIALLY HORRID!

The "Weather Channel" showing weather not looking good for much of the country - serious headed this way it seems! stay safe!

https://weather.com/forecast/regional/news/2019-04-12-severe-thunderstorm-tornado-wind-hail-weekend-system-mid-april

PLUS some of this MAY EFFECT US with CHRONIC PAIN and other types of severe Pain!

https://www.webmd.com/pain-management/weather-and-joint-pain#1

MTX AND folic acid crucial together for many!!!

THIS IS SO TRUE!!! W/O FOLIC ACID I WOULD HAVE MASSIVE MOUTH ULCERS

Methotrexate is a medication that doctors prescribe to treat certain conditions, including adult rheumatoid arthritis, some cancers, and severe psoriasis.

https://raawareness.com/methotrexate-and-folic-acid-for-rheumatoid-arthritis/

Lupus Flare, RA Flares, UTI's, Kidney Infection Severe Pain Stiffness, Swelling and the list goes on...

Lupus Flare, RA Flare, UTI's, Kidney Infections... All of the Severe Pain, Tiredness, Fatigue, Joint stiffness, Swelling and WHY Can't they stuff fIND SOMEWAY TO RID US OF THESE HORRIBLE CHRONIC AUTOIMMUNE ILLNESSES????

Of course I get "good news" over the whole endoscopy/Colo-Guard thing... THEN after suffering for WEEKS HONESTLY with what I knew was a Severe Lupus and RA flare(s).... The pain was so horrible I honestly thought my meds were "placebo's".... 

of course I knew better, but the stiffness, pain, in my hips, lower back, ankles, thumbs, wrists, shoulder, all were just about to drive me nuts. I had appts. already with my PCPC, last week, then I see my Pain Doctor this coming Monday and was supposed to also see my rheumatologist Monday so I only had to make ONE TRIP to Dallas, - 

My Heart Doctor and I have an appt at the end of April to discuss the possibility of the pacemaker, which I had been outside during the past couple of weeks, when we had "half decent" weather trying to catch up on killing a back yard FULL OF KNEE TALL WEEDS, from so MUCH rain and more still to come, and trying to do all of the "spring stuff"... but I was in so much pain, so tired, weak, dizzy at times... I just felt it was the Lupus and tried to move through it, until the flares were better. By now, usually I would have went to Urgent Care, got a shot of corticosteroids, the huge 14 dose of prednisone, to get over the flares, but as I said I already felt so lousy, wanted to get stuff done in between the sofa, TV and trying to stand the pain... and get groceries,
etc... 

so when I noticed about 10 days ago or more now, I was having to pee so much, which hot weather, drinking lots of green tea and water, and the Lasix, does that to me... but I noticed it was "way worse" than the usual.. then I noticed I was burning, and the pain began to feel more like "kidney stones" as I had before, but it had been years ago from the last time.

I had just moved back here, and this was before I had my Medicare, but I spent 4 times in one month, at the ER in a neighboring town, with 4 kidney stones,.. trying to get them to pass with lots of IV fluids, pain meds there, then they would sent me home with a few, and within about 5 or 6 days, the pain was back and I was back at the ER... repeating... finally I passed all of them, but it was a nightmare... after that, I have probably had a couple of small ones I passed... but I don't usually get UTI's and if I do - most of the time,

I really don't have "symptoms"... or thought I didn't, but this time I KNEW this was more than Lupus and RA Flares... sure enough, a severe UTI, so shot of corticosteroids and a huge 14 day round of Prednisone, and Levaquin for the kidney infection... I got the meds on Wednesday last week, and even yesterday, I am still not getting over any of it as fast as I felt I would. SO yesterday, my Rheumy's office called late to tell me they are NOT in the OFFICE MONDAY! So that means TWO trips anyway to Dallas, because I have to see the Pain Doctor Monday, my pump has to be filled....

I have SO MUCH I "want" to get done and some I NEED to get done, but I also know I HAVE to get WELL!!!! I am thankful for the good news on all of the colon and endoscopy stuff... really, but I just wished these stupid other CHRONIC ILLNESSES and PAIN would just give me a few months break, I HATE to ask to "go up" on my daily Prednisone which now is 5 mg daily... BUT it looks like if all of the other meds, Plaquenil, MTX, Enbrel, Prednisone small dose, etc d not start working better after these flares I may face a higher dose of Prednisone for a at least while, then taper back down again,... I still have the appt also with the Endocrinologist at the end of the month ... to see if the Thyroid and/or Parathyroid is still too HIGH and what we do about that. From what I've read and researched, the Parathyroid often is cause from a small tumor (usually benign) and may take a small surgery to get rid of... and of course "thyroid: issues run in my family, and medication often fixes that, unless again you have a "goiter" that has to be removed.... so again lots of "stuff" (when it rains does it ever pour)!

More Information Below on the Parathyroid gland and the Thyroid Glands, What they Do in the body, and all of the issues that can happen due to any diseases of these glands....


http://endocrinediseases.org/parathyroid/parathyroid_background.shtml


http://endocrinediseases.org/thyroid/thyroid_background.shtml

Colo-Guard Easy Extremely Reliable (colon cancer Biomarker/lesion screening) NON-INVASIVE and 95% Accurate!

Colo-Guard Easy Extremely Reliable (colon cancer Biomarker/lesion screening) NON-INVASIVE and 95% Accurate!

https://www.cologuardtest.com/

Ever had a "colonoscopy"? Te test itself is fine.. BUT THE PREP FOR MANY IS UNBEARABLE!!!! I "tried twice" and there was no WAY I cold possible follow the guidelines for the PREP! It made me literally sick for a week!

SO MY REGULAR PCP DID THE OLD FASHIONED, CHECK FOR 'OCCULT BLOOD" in the stool sample,, which came back "positive" - I needed an Endoscopy due to Barrett's Esophagus, which is far less an issue. You don't eat or drink after midnight, go in the next morning, are put under, and within a couple few hours unless they must do ablation to the Barrett's due to changes (which mine was fine)....

So I went online and found COLO-GUARD! I saw my General Surgeon and was telling him about it and he was going to suggest it since I just cannot go through the "prep" of a colonoscopy... He sent off the orders for the lab, they sent me the testing kit, which is easy to use, you send it directly back to the lab, PREPAID by them, they file your insurance, and within a week my doctor called with my results, NEGATIVE NO BIOMARKERS AND ANY RESULTS OF LESIONS IN MY COLON! :):) 

so NO COLONOSCOPY!!!!! THE ABOVE LINK WILL GIVE YOU LOTS OF INFORMATION, AND IF YOU are being told to have a colonoscopy, and your prefer NOT to go through hell of that horrid PREP mess, then talk to your physician about Colo-Guard!

I am very, very satisfied with the test and with the results. 

New Clinical Trial sponsoroed by Cure Click Primary Biliary Cholangitis

Itchy from PBC? A clinical trial is researching an investigational medicine that aims to treat the itching associated with PBC. #sponsored #cureclick 

Learn more! https://curec.lk/2PSFzXI