Thursday, August 16, 2018

#AtopicDermatitis Clinical Trial Sponsored by Cure Click

Diagnosed with moderate to severe #AtopicDermatitis? A remote medical study is now open and is seeking volunteers. Earn up to $300 for participation with no in-person office visits! #sponsored #cureclick Learn more! 


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Cure Click Sponored Clinical Trial for Uterine Fibroids





Consider joining a #UterineFibroids OR #Endometriosis research study! Payment up to $500. Varies by study. #sponsored #cureclick Learn More! http://curec.lk/2ATu8oS

Wednesday, August 8, 2018

Our "fur-babies" & just how critical they are many of us our Live's, chronically ill, unable to get out, or have little or no family nor friends


I realize many people in the nation and around the globe have "fur-babies"... I know there are a great deal of us that think of them, as a family member, & crucial to our daily living.

When you get a puppy, kitten, or any type of animal that you can "bond" with, that bond can be so tight that either "you" or your "Fur-kid" can be severely upset for one or the other to not be around.

I know for me, if I didn't have my two "fur-babies" I don't think I would survive with all of the health problems, loss of two other precious pups, so much pain, & the "difficulty" in life to survive all we go through.

Those with pets, know they love unconditionally, they are loyal to the "inth" degree, and they treasure YOU as much as you treasure THEM!

It even makes me upset just to have to go away for a day and night, and them not be able to go... I worry like it was another "human" family member, they are who keep me smiling when I want to "pitch life" down the drain and say to hell with all of it.

So, I "lost" two of the most precious pups of my entire life... my dearest Tazzy, my Pug that I got for a Christmas present and she was only about 7 weeks old when I could finally pick her up. She was everything to me, no matter how sick, how much pain I had, how things seemed just out of kilter, there Tazz was to make me smile... Then several years later, I decided to add a 2nd fur baby to my home. So, Bubba Gump, (Bub's as I called him) who was part "doxie" and part "chiquawa" but I didn't see much of the 2nd part in him... they called him a "Chi-weenie" but the "Chi" was not there in looks. Anyway, he also came along at about 6 weeks old, so tiny he could sit here on my desk with me. Tazz was about 6 almost 7 years old, when one morning I noticed she was "acting odd". From the time I got her, about 10 times during her entire life she would get a "seizure like" episode, and would shake, shiver, get tired, and we had to hold her, talk to her, and in 15 minutes she would usually calm down, and be fine and ready to play. One morning, she just acted like she didn't have an energy to even walk to the kitchen. I went to look for her, since she was not coming when I called her, and she was laying beside her water bowl, so weak I had to literally help her put her head up enough to get some water. I almost had a heart attack.... I went into almost the worst panic attack I had ever had, and immediately picked her up, wrapped her up and rushed to our Vet, who thank goodness is only about 3 blocks from me... they took blood work, and Tazzy, just was limp and weak... and my heart broke to see her like that... I will never, never forget that feeling I had... so the Vet said she felt like taking her home with me was the best idea and then bring her back the next morning for more tests... Well, I think the Vet and I both knew Tazz would not go to the Vet the next morning....

It's taken me a while to even try to finish and post this. I still feel the pain from such a great loss, of my two fur-babies. Those that don't have pets, may not understand the way they become a family member. When you live alone, or don't have much family, or many friends around, that one or more pet, whether it be a dog, cat, or others, are what keep you going. The days when the pain is severe or any number of symptoms arise, I can look down at Bella and Peanut, and know that I am "needed and loved unconditionally by those two small tiny fur-kids....

I wanted to get this published, but I will close this one now, and do another in a few days.

LOTS! Going on - Yet "Spring" hits with "Winter" Weather, floods, Mudslides, Tornado Season - &?? CHRONIC PAIN!

Most of us have been looking forward to the sun, the warmer days, more light rather than darkness by 5PM, time for kids to be out for the summer soon, college students also, & those of us with chronic pain, hoping the "warmer" days will bring much needed relief.

Although most with different types of joint and muscle pain, such as "arthritic illnesses and diseases", muscle pain, spasms, even some of us that have had a hip repaired, or any type of joint replaced; often the ""cold, dreary, wet" time of winter, can make that pain even worse.

When I first began having migraines at 17 years old, I recall telling my doctors that the "weather" especially storms, or a drastic change between hot and cold, would make my migraines worse. I was told back then that the "weather" had little to do with it. In other words I was "full of bull".... YET... 20 plus YEARS later, and most doctors agree, that changes in the pressures, in the humidity, from cold to hot, or hot to cold, storms, any type of change in our weather, CAN and often DOES effect "pain, swelling, and our general health". 

I even told my Orthopedic Surgeon that operated and replaced both knees, that I had the same "feeling" of "phantom leg pain" at times, as if I had actually had an "amputated leg". Even though my knee was totally repaired, it was a pain as if the knee had not been "replaced" yet. Of course we still have ligaments, tendons, and those types of things that help to hold new "replacement" parts in have "nerve" memory. 

There are day I think back to telling the doctors what I did, and them dismissing me as if I were half nuts! Yet, not that many years later, research proves that it is very true and very possible. 

I've struggled (as many with the flu season as bad as it was and still is bad in some areas) the entire fall and winter, with being disgusted. The weather was so cool, rainy, many of us with "autoimmune issues", the flu being several strains, and many people even people in their 30's passed away from it. So, trying to stay away form the market, from going to Wally World, even from our physicians offices. People were so ill, and it was everywhere. I felt like a "caged animal" at times. It was myself and the fur-babies; we had our own "mini-Thanksgiving", "mini Christmas" and rang in the New Year ourselves at home... alone. 

Now it seems we are being "fooled" at the moment. Like today, it is "beautiful", sunny, not a cloud in the sky, yet the "wind" is either blowing from the North or South, and it's COOL! The mornings are still so cool, going out without a jacket on will be miserable. 

Then by noon, it's warm enough to shed the jacket, and almost warm enough for shorts and short sleeves. Yet, come about 5M, and it begins to cool down. Once again, I am hunting my longer pants and my jacket. 

I spent almost the entire holiday season trying to "nurse" a sinus infection. After weeks and weeks, I tried to "pick" a time when I thought not many would be in Urgent Care, right at the time, that hopefully not all with the flu would be there. The first visit, I got there and no one else was there. By the time, I was leaving, ALL of the staff, and ALL of the patients had masks on! They even gave me one although I was headed out the door, so I would not possibly be able to get contaminated. I would not go into the pharmacy. I drove through for several times, just so I would not get exposed, if I could help it. 

"So far".... I have been able to avoid the flu, BUT NEVER say NEVER... as it goes. For the most part, I feel it has "left the building" but I am still cautious in the market, and in the stores. Washing hands, using the wipes on the baskets, spraying down my reusable bags with Lysol, wiping down my purse, using the hand sanitizer... anything to "knock" down the issue of accidentally being contaminated. 

Yet, I am SO BEHIND! Behind on everything. One of my huge trees, almost has "passed" on me. I have 3 HUGE, HUGE CREPE MYRTLE trees

Saturday, July 28, 2018

JULY is JUVENILE ARTHRITIS MONTH!



300,000 CHILDREN
IN AMERICA HAVE ARTHRITIS


And we need your help spreading the word.


JULY IS JUVENILE ARTHRITIS AWARENESS MONTH


That’s right, kids get arthritis. It is a common misconception that only “old” people are afflicted with arthritis. Nearly 300,000 children in America have been diagnosed with juvenile arthritis.

Thursday, July 12, 2018

Weather, Chronic Pain, Pain Pain and MORE PAIN!

Any and everyone of us here, there and yonder, knows how much the "weather" can effect chronic pain. Other illnesses such as Lupus, RA, Osteoarthritis, Joint replacements, cervical spine surgeries and problems, and many more illnesses are "effected" by weather.

Oddly enough, it was not that many years ago, that I would tell my doctor(s), not that long ago, ONE doctor saw you for just about everything.... that THE WEATHER MADE MY MIGRAINES WORSE! Back then, and as I said NOT that long ago, they would look at me like I was nuts, bonkers, and just needed some reason to "complain", go the the Emergency room for the dreaded Migraines that plagued me from the time I was about 17 years old, until I then began having "Lupus Migraines" about 10 years ago.

Lupus Migraines, as I call them are an entire different "ball game" from regular Migraines. Used to pain medication worked for the other migraines. Even though I had to fight tooth and nail to get it often times, my severe headache, nausea, the grogginess, the feeling of wishing you could remove your head from your body was horrid. Yet pain medications handled the problem, most of the time.

Then when I began having Lupus Migraines, no amount of "regular pain medications" in the world will do a thing for them. I must have a huge injection of corticosteroid, and then 10 to 14 days of Prednisone, the "step down" dose, in order to get rid of that type of Migraine.

Fortunately, getting that help is easier than having to go in for any type of narcotic pain medication. Yet, I still have to have those also, for the other "many chronic daily pains"I dread, must still have my pain pump, and I have pills for "break through" pains, especially during the times when the weather acts nuts, causing it to reek havoc with my entire body. I "had the surgeries" to help rid me of the other pain, from the joints that have just disintegrated over the years. I tried to tell doctors way back in my twenties, that I had "genetic arthritis". Again, although not that many years ago, they just didn't want to accept the fact that "someone as young as I was" could have that bad of joints. Yet, it was true. I tore cartilage out of my knee at 15. But, by the time I was 21 it needed surgery again. Then the other knee, my elbows, my shoulders, all began giving me problems. I had them injected more times than I can count.

After the many, many tests, scans, injections, medications, even was hospitalized for a few days to try a medication that was "dangerous" to my heart, and it didn't do one thing for the headaches.

After having several more joint surgeries by the time I was 35, I began getting through to some doctors, that these problems were not all imaginary, but were truly issues that I probably was born with. I even had double hernia surgery about 4 years ago! The surgeon told me I was probably "born" with those areas "weak" like some infant girls are, and after years of walking, lifting, bending, picking up something heavy and so on, that they finally became fully herniated, and had to be repaired. Even that was a nightmare. I could Feel them, I could SEE them, yet 3 doctors and even a sonogram didn't pick them up. I finally went to a surgeon I trusted and HE could feel and see them. HE knew what to look for, and he also was well aware of some women, were born with those spots weakened. And some went on to develop hernia's that needed repair.

Usually you don't catch me "lying around" or doing basically nothing. I fully believe that laying around, even when you feel like "hammered hell" can just cause you to feel worse, hurt worse, and give you a lack of energy, lack of muscles, an you question, which is better? Am I harming myself worse, by getting up and doing  things? Or am I better off "working through the stiffness, pain, swelling, and all of the side effects that go along with these illnesses?   

What sucks is that although I usually DO feel better up and moving, even if it is slowly, it still at times takes all the energy and will power I can muster these days.  I have people who stare at me when I park in the handicapped place. It's still hard to have "invisible illnesses". As much as is out there about so many of us suffering, with these horrid diseases, yet there are still "uneducated", "mean", selfish people that want to make fun of, or cause us more grief that we already deal with on any given day. Just sitting here trying to type had caused my wrists, my upper back, my hips, all to hurt like hell.

So, me now trying to sit down and write a 3rd book, when I need to spend HOURS typing it out, almost seems as if it will never happen.                                                                                                                                                   

Sunday, July 1, 2018

Happy Fourth of July to all of you and a Happy Birthday to my "Bella Doxie" who turns a year old on the 2nd



HAPPY 4TH OF JULY TO ALL! MAY FREEDOM RING!


Peanut and Bella on July 1st, day before Bella Turns a Year old!



Bella about 6 months ago!





Bella, Peanut & Me Wishing you Happy 4th!!!

Bella at about 2 months old!


Bella around 4 months old

Saturday, June 23, 2018

Dravet Syndrome Awareness Day 2018

Saturday, June 16, 2018

Happy Father's Day to Each Dad, Step-Dad, Dad to be, Granddad and My Own Dad who went to Heaven in 2005!



HAPPY FATHER'S DAY! To Every Dad, Granddad, Step-Dad, those who are waiting to become a Dad, and to those such as Wonderful Son In Law, who is a tremendous Husband, Dad, Son, and Son In Law!!!! wishing all Dad's including my own who went to heaven in 2005 a very wonderful and special day!!!!!




Friday, June 15, 2018

Saturday, June 9, 2018

Keith Urban Lyrics, and trying to hold myself together after... 2 years today since Mom passed away, and the loneliness of the loss of her, Dad, Tazzy, Bub's and my love..



Yes, today and yesterday have been difficult for me. Yesterday, things, several things really hit me, right in the gut, literally. By the time I got home from Wally World, I was physically sick to my stomach, and felt horrid all day long. It was so bad, I never ate anything for dinner at all. I fed the pups, and they "knew" "Mommie" was not feeling well. 

They cuddled up with me on the sofa, and would not leave my side. of course today is the 2 year anniversary of my Mom passing away. In my mind, I've played over and over what our doctor we saw, usually had our appts on the same day, used to tell her. He would say that she was going to "outlive" him and I... not that he meant that "badly"... because of course with my health issues, he knew that it was a true statement, but he wanted my Mom to pull herself out of where she would "think she was too old for this, that or the other, so it was his way of telling her at the time "health wise" Mom was much more "healthy" than many of us. Yet, although she was, never did he even believe how quickly she went downhill when the Lewy Body Dementia hit.


 I had seen signs for a while, before she really got so bad. Here and there, being forgetful, losing things, not recalling events, yet of course at 80 years old, heck at 40, 50 and 60 years old many of us are "forgetful"... I blame the "world" we live in for the stress and strain, the toll our minds and bodies take these past 25 years or so... things used to be so much simpler, it seemed the "burdens" we have now, were not as they were back then. 


From the selfish ways many of us have abused our water, land and air, to technology that in ways is wonderful, yet in ways, it has caused families to not spend "time" together... kids and parents on their phones, the computers, playing games, you name it, we tend to "have something else more, better, important, than a family meal together, or a quiet night without a TV, phone, or computer. I realize that NOT everyone has given up what family time is, and it seems that some have tended to "go back" to that time... when everyone was at the dinner table, no TV, no phones, just dinner, and asking one another how their days were. I had those all my younger life... and until my kids were well into being teenagers, for the most part we also spent nights together, around the dinner table, talking to each other, and caring. I know that has carried on to my daughter and her family. Of course we are "busy" but for the most part, her children, husband and her spend their dinner time together, sharing in one another's lives. There is so much that I think about when i think of my Mom... 


Mom never "gave me crap" about tattoo's, belly rings, tongue rings... she may have not agreed, but, she knew that I had my own personal reasons for all of it, and she was never one to put me down for making those choices. Mom spoke her mind though... anyone that knew her, knew that what came out of her mouth, was her personal thoughts, and she expressed them. Not that it was always "in a proper place" or said in a "proper way" but it was Mom, and you had to accept that part of her. So often, she was overly concerned about my health and me. Sometimes to the point I think she worried herself way too much. 


But, she knew the pain and suffering I endured, mentally, physically and emotionally, and many times she told me, she could never "brave" what I went through daily. Yet, I always told her, that she need not worry, I am a survivor, and what is, what happens, why it happens, I don't know but I do know it serves a purpose. She was so proud of me... when I went to college and worked full time, and took care of my home and family, she was my greatest fan! She urged me to oil paint, and especially all of my poetry and writing. When I published my first two books, she cried tears of joy, for she always knew I had something very special, that gave me the words to write, and how much I touched the hearts of those around me. She was always the one to encourage me, whatever it was, she knew I could do it. LOL, so often she told me I should have went to medical school. I would have been such an asset to many as a doctor, or in research. 


When I got to go to Washington DC with the Arthritis Foundation, that was a moment that she also cherished with me. My walls around my desk are covered in the awards, the recognition, the paper clippings when I had an article in our local paper. The Proclamations for Lupus, for RA, signed by our Mayor and some signed by our Governor. Mom was my best friend, after I was alone, she became the one that stood with me, that talked to me, that helped me carry on, even though I was in such a mess after being separated. She understood, because after Dad passed away, Mom was very frightened of what might happen. Coming back to TX was a ver difficult thing for me, I never wanted to leave Seattle, but she needed me, so I came back here to help her. I miss her every day, and even though Dad passed away n 2005, I still miss him. 



Often thinking to myself, that we would be fishing today if he were here. Or I would be visiting, or we may be going to the casino tomorrow if she were here.... all of the things and many many more that I so miss... from the little things to the small things, after the loss of my parents, losing my Pug Tazzy, and then losing Bub's after I broke my hip.... losses that cut right to my core, and then Jim no longer here... my world on some days seems so upside down..... So, Mom, I hope you know how much I miss you and Dad, and there are days it is s struggle... but I put ne foot in front of the other and try to----- carry on



Friday, June 8, 2018

Cure Click and NEW Clinical Trial with Narcolepsy


Narcolepsy is a sleep disorder that involves excessive daytime sleepiness (a “sleep attack”). Cataplexy is a sudden, temporary loss of voluntary muscle control that may be triggered by a strong emotion (like laughter).
A new clinical research study is looking at how safe an investigational medication is, and how well it works, for cataplexy and excessive daytime sleepiness in people who have narcolepsy with cataplexy (narcolepsy type 1).
For patients who meet the study criteria, the trial will last up to 22 weeks. All study medication and study-related procedures will be provided at no cost to you. The study will involve visits to a study site.
Sign up to take part in a clinical trial. You can learn more and begin the qualification process at https://trials.autocruitment.com/forms/NarcolepsyStudy15-006_CC/

Saturday, June 2, 2018

DIABETES 2 NEW CLINICAL TRIAL BY CURE CLICK!

If type 2 diabetes symptoms aren't well managed, it can be difficult and expensive to find new medication options. A new study is now available that is comparing two FDA-approved type 2 diabetes medications. Researchers are looking for volunteers from diverse ethnic and racial backgrounds to take part.
You may qualify to take part if you:
  • Are 18 or older
  • Have been diagnosed with type 2 diabetes for at least one year
  • Have uncontrolled diabetes as demonstrated by a HbA1c between 7.5% and 10%
  • Are Hispanic/Latino, African American/Black, or Asian
If you or a loved one are experiencing issues with their management of type 2 diabetes, act now! #type2diabetes #sponsored #cureclick

Friday, May 25, 2018

Happy Memorial Day and also Come One, and All to the National Polka Festival!






Time for the Polka lots of it, much "Pivo" for many, so much of a crowd from all over the world for the National Polka Festival, food, fun, and a parade, plus much more. Anyone who has never been to it for the weekend that actually some of it begins today, then the main kick-off is the parade at 10AM tomorrow morning.. from there dancing in the streets and some of our streets are STILL the original brick.. much eating, and I am sure even more BEER flowing, for as the song goes, "In Heaven there is No Beer.".. just one of the many songs that will grace the airway of our town this weekend!

Friday, May 18, 2018

Article from Texas Man and his story about Chronic Pain

https://www.painnewsnetwork.org/stories/2018/5/9/our-government-is-murdering-its-own-citizens

I am about to start raising holy hell because I now have nothing to lose. The doctor that has been taking care of me the last 5 years is suddenly scared to death and cutting my pain meds, while my insurance is cutting my benefits and raising my deductible and co-pays.... see the rest of the story at the Pain News Network at the link above:...

Terrible and Frightening News from the Pain News Network for Chronic Pain Patients and those following Major Surgeries and More!





Pain sufferers and patient advocates are overwhelming opposed to plans by the U.S. Drug Enforcement Administration to further restrict the supply of opioid medication to punish drug makers that allow too many of their painkillers to be diverted and abused. ... news story follows down at link:...






https://www.painnewsnetwork.org/stories/2018/5/9/critics-say-dea-plan-could-worsen-opioid-shortages

Wednesday, May 2, 2018

(From the Pain News Network) Recent Death of a "Chronic Pain Patient" partially blamed on the DEA and their horrible outlook as far as pain patients....

This story is both sad and sickening. I've had this very conversation many times with my Mom, before she passed away.
She told me often she didn't see how I could withstand the amount of pain I put up with almost daily at times... And as I told her, it is NOT easy! You try in every way to "put it out of your mind" but there are days it can be overwhelming and here it one example of how a 41 year old Mom and beautiful young woman could no longer deal with the scope of possibly not being able to curb the severity of pain she was going through...



https://www.painnewsnetwork.org/stories/2018/4/30/death-of-pain-patient-blamed-on-dea





Monday, April 30, 2018

UPDATED PATIENT GUIDE FOR ICER REVIEW OF MIGRAINE PREVENTION MEDICINES

GUIDANCE ON PATIENT SUBMISSIONS DURING PUBLIC COMMENT PERIOD

DUE BY MAY 8, 2018

Now is the time for all of us to tell our journey through the maze of Migraine Hell! Please see the URL for further information or if you would like to participate. 
Here is the full URL to see the information:


https://www.headachemigraineforum.org/icer/

Saturday, April 28, 2018

Fed Up With Pharmacists, Doctor's, Lupus, Medications and Fed up with too many side effects! Loving Fishing, and Better Weather


Was out at the lake yesterday, but the wind picked up the wrong direction and I had to come home. I can't stand in the sun due to the Lupus and meds etc... and I HOPE I finally have some sunblock for my FACE that DOES not cause breakouts. I FINALLY ALSO GOT HUMANA AFTER 4 WEEKS OVERDUE OF MY RA MEDICATION BACK ON TRACK! THEY ARE SUPPOSED TO DELIVER IT TUESDAY! I hope so, my fingers, THUMBS ARE THE WORST, WRISTS, ANKLES, EVERYTHING IS SO STIFF, HURTS, I COULD NOT EVEN BUTTON OR UNBUTTON MY JEANS OR ANYTHING THESE PAST FEW DAYS... 

I can't cut up fruit, and even trying to be out yesterday cutting a few tree branches down for the trash, I accidentally hit one of the branches on my leg, and it was just a little nick, and it bled everywhere. I had to come in and I already have spots on that foot and ankle where mosquito's bit me and it itched so badly, I've got a rash where I scratched it in the night... So I've had to bandage up my foot so much it looks like I cut off half my foot!!! And it's just a few scratches mainly, but if I don't the pups want to lick it, and then I was outside this morning, weed eating and spraying the weeds in the back, raking up and so forth. So, I fear infection so badly. Ever since the incident on both thighs where I had the cellulitis, that turned into "holes" in my legs, and I still have terrible scars, that although I went to the wound care people for 6 weeks in Dallas, they still never really healed where they covered over and look nice. I am almost embarrassed. Between those, the cuts on my knees from the replacements, and now for some reason, I have "spider" veins so badly in my ankles they look horrible!!! And it is so odd, I never had any problems, then about a year ago or more, 

I began getting them all over both ankles. I don't know if me spraining them so badly, that Sunday of Mom's funeral, and I had already sprained the right one twice before, if they "broke" those vessels that badly or what, but they are so ugly. I've asked the doctors and they told me that insurance probably would not pay for it. But, they also tend to "seep" under the skin, so at times those ankles where the spider veins are so bad will "weep" and cause my ankles to swell. I know they have new treatments now. They used to put saline through them, and they said it hurts like hell. But, now I think they can "laser" them... I am thinking about going back to the foot specialist I saw with my ankles being so badly sprained they would not quit hurting. Plus the right one would swell so much, I could not walk on it. He put an injection of corticosteroids in it, and that really helped to stop the swelling and pain. But, the spider veins make my ankles look like I am an old, old lady! I guess though after all of the surgeries and scars from them, I get to where I don't care if people think they look bad or not! I refuse to COVER UP and burn up and not wear shorts, when it's hot! 

Anyway, been a busy week, and I've been busy every day doing something. I still have not done  that stupid lab work, but it has to be fasting, and I get up so early, I can't go for hours without my coffee or tea... last time I ate breakfast early, then went for 8 hours without food and then went in that afternoon for the blood work, rather then trying to go in at 8AM. And I got kind of peeved at my Cardiologist last week. ^ months ago when I was there, we talked about putting in a pacemaker, due to my heart rate being so slow especially at night. It will be at 43 beats or less at times, and she suggested since I take the medication for the "extra beat" I have she could do the pacemaker. But, of course once it's there it is forever. So, this time she talked about sending me to a "heart rythym" specialist. She said he could possibly try a "different medication" or decide whether to do the pacemaker.. Well I said, 1st of all, I am taking too many meds as it is and I am just about ready to throw them all out the window and use "natural" supplements, because each time we try a new medication, I have problems from it. Then she admitted she DID NOT do the "medications" this specialist does "because there are so many side effects"... so I said well then, "if" I decide I am "bothered" too much by the arrythymia THEN she could DO THE PACEMAKER AS WE ALREADY TALKED ABOUT! She was the one who just told me 6 months ago,, the pacemaker was the simplest way to "correct" the slow heart rate!!!!! So, WHY WOULD I GO TO YET ANOTHER SPECIALIST, THAT FIRST OF ALL UNLESS IT'S LIFE OR DEATH, I AM NOT TAKING ANY NEW MEDICATIONS!!! I am FED UP WITH THEM, AND ALL OF THE SIDE EFFECTS THEY CAUSE!!! 2ND OF ALL, she can do the pacemaker right here in my hometown, as a day surgery, and I can go home in a few hours. I DO NOT NEED OR WANT YET ANOTHER "SPECIALIST" THAT I HAVE TO GO TO DALLAS AND TRAVEL TO SEE! It's bad enough with the Rheumy, Pain doctor, and the Orthopedic surgeon, without adding to the list!!!!!

Wednesday, April 25, 2018

FED UP WITH PHarmacies, and them "not doing what the doctors tell them to do!" This means YOU HUMANA!!!


FED UP WITH HUMANA SPECIALTY PHARMACY! They have SCREWED UP 3 WEEKS IN A ROW, & I STILL DO NOT HAVE MY RA MEDICATION!!!!!


I'VE BEEN ON THE PHONE WITH THEM AT LEAST 5 OR 6 TIMES! EACH time they have "a different" reason, and I told them I am fed up and this is why I DESPISE USING A MAIL ORDER PHARMACY! You "never get a straight" story" as you do when you can see the pharmacist face to face!

I got so mad this morning after weeks of them "making every excuse" when basically THEY WANT TO TELL MY DOCTOR WHAT I CAN AND CAN'T TAKE! WHICH IS BULL! But, I "chewed her out" and hung up... the woman on the phone, was already being a bit "rude" and that just make me more upset, so I told her off, (but I did not say any curse words() LOL although I wanted to! And just hung up on her, THEY ALWAYS TRY TO BLAME IT ON THE DOCTORS! When it is THEM THAT HAVE SCREWED UP!!!!!

They always want to "say the doctors office is messed up" when it is usually THEM THAT ARE MAKING THE MISTAKES! Plus now they as I said on Facebook, want to "tell our doctors" what they "can and can't do"....

It is none OF THEIR BUSINESS OTHER THAN TO FILL THE MEDICATIONS AND GET THEM TO THE PATIENTS!!!
They are causing me needless pain, needless wasting of my time on the phone again and again. They are WASTING THE DOCTORS TIME, with Paperwork"

Saturday, April 21, 2018

Diabetic Nerve Pain and New Clinical Trial by Cure Click

85% of people with DPN say #diabeticnervepain affects them daily. Research studies enrolling now. Payment varies by study up to $300. #sponsored #cureclick pic.twitter.com/HKjwOJpDw6 See if you qualify! 







Sponsored by Cure click

Crohn's Disease New Clnical Trial by Cure Click

Housebound with #Crohns flares? Local studies are enrolling now. Payment varies by study up to $750. Learn more! #IBD #colitis #sponsored #cureclick http://curec.lk/2j2LqIY




#AnkylosingSpondylitis - Clinical Trials by Cure Click







#AnkylosingSpondylitis? Research studies enrolling. Earn up to $500, varies by study. #AxialSpondyloarthritis #axSpA #AS #sponsored #cureclick Learn more! https://curec.lk/2Eu7ZxF

#Parkinsons patients, and Clinical Trials

For #Parkinsons patients, in addition to the more well known motor symptoms, up to 50% of patients also suffer from excessive daytime sleepiness. This can have a significant effect on the quality of life of both the patient and their caregiver, and in some cases be even more profound than the motor symptoms.
A new clinical research study is looking at the safety and efficacy of an investigational medication for excessive daytime sleepiness in patients with Parkinson’s disease (PD). For patients who meet the study criteria, the trial will last about 9 weeks and involve 7 visits to the study center. Qualified participants will be provided compensation for time and travel.


Please consider helping medical research in this important area by participating in this trial. You can learn more and begin the qualification process at https://curec.lk/pdblogger.

Friday, April 20, 2018

NEW RA Medication "JAK and JAK-1 Inhibitor for "Oral Use" in Rheumatoid Arthritis

New Clinical Trials and Information from the FDA in regard to a brand new Oral Medication, first of it's kind for RA... on the horizon possibly...




There is a "supposed" New Rheumatoid Arthritis Drug, (Oral) another JAK and JAK-1 Inhibitor on the horizon BUT there seems to be questions in regard to causing "blood clots" and it is in Clinical Trials at the time. This would be the "1st) of a kind RA medication that would be a ONCE daily oral med. We NOW have another JAK Inhibitor, Xeljanz on the market. You take it twice daily and it is an oral medication. What my Rheumatologist told me it is usually good for those with >mild> RA as a "stand alone" medication BUT for those like myself with "severe" RA,other medications such as my Actemra that I take by injection which is a biologic, along with other medications are needed when the RA is in severe form. I've really been through the mill on these two. I've been on Actemra now for about 9 months or so. But, my hand joints,wrists, fingers and especially my thumbs are really bad! So, he put me on the Xeljanz orally I take twice daily. Well at first I was thrilled then I got to reading and worried about the biologic and the JAK inhibitor together. I spoke with my PCP and see my Rheumatologist next week. What my PCP told me, is that "each person" is individual, and they have to put out the information for "overall" folks, BUT that my Rheumatologist has done is own "testing" as far as how his patients and those in the clinic do overall with the medications. So, he decided for me it was a "good fit"... which of course we all know that because you "read" something online does NOT mean it is so for you also... but this is exciting news for another alternative, or addition to our other RA medications. As well as many possible other autoimmune illnesses.

Here is more information and this is by Lilly....






"The Texas Blues" written and sung by me


I don't have the guitar or me playing the song but he is one I wrote back a while ago, and added to it lately... I am a bit off key LOL... plus I've had such a sore throat lately, I have a difficult time trying to sing.. after the last neck surgery, he really did a number on my vocal chords going in through the front of my neck, so I've not yet gotten my voice back as it was and may never get it back all the way....






"The Texas Blues"copyright 2010 Rhia Steele





Tuesday, April 3, 2018

APRIL is National Sjogren's Awareness MONTH!!!!


http://info.sjogrens.org/conquering-sjogrens/topic/april-awareness-month


This was a "strange term" the 1st time my Rheumatologist said it to me. I had heard of it a couple of times from women I knew that had it, but I had no clue just how "damaging" this illness (autoimmune at that) can be. Did it ever takes its toll on me, when within 2 weeks I had 3 TEETH BREAK OFF AT THE GUM LINE! From that point, ONE OF THE MOST HORRIBLE THINGS I EVER DREADED HAPPENED TO ME... I HAD TO LOSE ALL OF MY TEETH AND HAVE DENTURES! I always "feared" losing my teeth, or losing my hair! One of those came true.... and to this day, (this was in 2014 that it began) I STILL FEEL SELF CONSCIOUS, AND IT HAS HINDERED ME IN MORE WAYS THAT YOU CAN IMAGINE, EATING, SLEEPING, BEING IN FRONT OF PEOPLE, TALKING, SINGING, YOU NAME IT, IT IS HORRID! I spent well over 6 MONTHS, having the REST OF MY TEETH THAT WERE ROTTEN AT THE GUM BEING EXTRACTED, then at the last he pulled ELEVEN more and put the dentures in... and again I will never be the same.... so SJOGREN'S is nothing to TAKE LIGHTLY! It effects ALL MUCUS MEMBRANES OF THE BODY, FROM THE MOUTH, NOSE, EARS, SKIN, YOUR INTESTINES, YOUR HEART, EYES, ANYTHING THAT HAS A MUCUS MEMBRANE CAN BE DAMAGED OR SEVERELY RUINED JUST OVER NIGHT... AND RIGHT NOW HONESTLY THERE IS NO CURE, AND EVEN THE TWO MEDICATIONS AND I'VE TRIED BOTH.. DO NOT REALLY WORK ALL THAT WELL....


Saturday, March 31, 2018

May The Easter Blessings, Fill your heart with joy, and give you the strength and courage to face tomorrow and the next.... Happy Easter




Because He Lives, We can hold on and face all that this Old World throws in front of us. As we walk through illness, stress, jobs, and all of the "bad" things here on Earth, we CELEBRATE THE GOOD ONES, AND KNOW THAT HE LIVES FOR US!
May you know in your heart on the 3rd Day the stone was rolled away, and Jesus Lives for Us....





Friday, March 16, 2018

New Flu Vaccines in Clinical Trial by the NIH!


Thursday, March 15, 2018

H7N9 influenza vaccine clinical trials begin

NIH HAS NEW CLINICAL TRIALS UNDER WAY FOR NEW FLU VACCINES!!!



https://www.nih.gov/news-events/news-releases/h7n9-influenza-vaccine-clinical-trials-begin





AUTOIMMUNE ILLNESSES, & CAN YOU have "Botox", "Restalyne" Or some of the other injections for lines around the "Mouth and Lips?"

QUESTION? ANY OF YOU WITH AUTOIMMUNE ILLNESSES, HAVE YOU EVER WENT AND HAD ANY TYPE OF FACE/LINE PROBLEMS DONE? LIKE GETTING A BOTOX INJECTION, OR SOME OF THE NEWER ITEMS THAT ARE DONE BY INJECTIONS? I KNEW ONCE I GOT MY DENTURES (DAMNED SJOGREN'S TAKING ALL OF MY TEETH) THAT I WOULD HAVE MORE OF A LINE ON EACH SIDE OF MY FACE AND ON THE TOP OF MY LIP... 


BUT OF COURSE WITH AGE THEY ARE GOING TO BE THERE AND GET WORSE. SO, I HAVE READ BOTH "OKAY" AND "NOT OKAY" TO HAVE THESE TYPES OF PROCEDURES DONE IF YOU HAVE LUPUS ETC??? ANYONE HAD ANY EXPERIENCE, AND IF YOU DON'T WANT TO SAY ON MY MAIN PAGE JUST SEND ME A MESSAGE ON THE MESSENGER. I AM REALLY, REALLY BUMMED ABOUT HOW THEY ARE WITH THE DENTURE SITUATION, WHICH I HATE THEM ANYWAY, THAT IS ANOTHER ENTIRE STORY! BUT, I WOULD LOVE TO KNOW MORE FROM SOMEONE WHO HAS EITHER TRIED TO HAVE IT DONE, OR HAD IT DONE ETC!!!!! THANKS! RHIA


ONE ARTICLE:   https://www.skintour.com/q-and-a/autoimmune-diseases-and-fillers-are-they-safe-can-food-help/

Friday, March 9, 2018

Young Women from 24 to 32 or so that really NEED HELP TO GET THEIR LIVES ON TRACT... AND wanting a 2nd chance & the difficult time they have. Me, lupus, RA, Sinus infections infections and Life!

Lupus Flares, Pain Pump refill, Young Women & getting another chance to change their lives, LIFE, and Chronic Illnesses with PAIN!



Everyone, it has been MORE THAN AN INSANE WEEK OR MORE FOR ME! Between my own doctors visits, and a friend had a new baby and there were issues, but all is well now, I had to go over to the next town in our county to renew my driver's license, since it's been 12 YEARS LOL since I had gone in and took a new photo etc, I had to physically go in this time to renew it. That took forever; although I must say the system now is better than it used to be. Then I had another friend with problems, and was trying to find some help for her, along with my own other stuff, cutting tree limbs, and I've got to get to the market today, but I have not had time to clean my house like it needs, and then I have to take a shower, and it's so pretty outside, I need about "5 of me cloned" so I can do 20 things at once!!!! I have not felt that great yet either. In fact, I have not started my RA meds yet, since being ill with the sinus infection. For some reason, I was running a fever, low grade, but still a fever Monday. 

I went in for my pain pump to be refilled, and when they checked it, sure enough I had a low grade temp. I came home and checked it myself, and I was still running a bit of one. I didn't run any fever at all with the sinus infection. Plus, I have kind of "stopped" running a low grade temp with the Lupus. Used to I seemed to almost have a low grade one daily with the Lupus. It went back down and as far as I know has been back to normal the past couple of days. But, I was concerned so I still kept off the Actemra and the new Xeljanz, until I could see what the temp was all about. But, I've had a damned headache, and a bad one at times, for the entire week! IT could be "stress" or maybe I have a Lupus flare, that will give me a Lupus Migraine from hell at times. 

So, yesterday I "almost" went BACK for a 4th time since the 1st part of January and had them give me a prednisone injection for the headache. But, I toughed it out yesterday, and it is not so bad so far this morning. So, it could be anything causing it. With everything going on, as I said I could be more "stressed" out than I think and it's causing the headache. Usually I don't have one that bad. 

When they are bad enough I want to scream and cry, usually it's due to a Lupus flare, or I am sick with something. So, I am going to take the Actemra later this evening and then take my 1st Xeljanz tomorrow and see how things go. Please keep me and those couple of people in your prayers, with problems and the young woman with a new little baby girl. She needs lots of prayers, so she can get her life together, and get back on her feet. The very "odd" thing is, lately, I know of about 4 people, that have someone in their lives in the same situation. The nurse that comes to see me weekly from my insurance, is helping a young woman with kids, and her trying to get her "stuff" together, and the young woman I know. Then my daughter also knows a young woman going through about the same situation, and I have another friend that has a daughter who is really trying to get her life on tract, get a job, her own place to live, and put herself back on the right roads.0 

These young women ALL need our prayers. It seems that many of them at about 25 years old, either get involved with the "wrong crowd", have a child or children, either the Dad is not there or does not help out, and they are desperately trying to dig their way into a 2nd chance. But, that is hard to do... it's hard to get any assistance these days, it takes so much time, paperwork, and red tape. Then of course we have some that have "abused" it, so that makes the ones that really WOULD benefit and try to do right unable to get the help they need. So, something about that age group, some between about 24 to even 32 or so, really lots of young women out there with the same problems... and NO PARENTS, that either will help, or are even around to help.... it sucks, and i AM SO PROUD THAT BOTH OF MY ADULT KIDS ARE IN A PRETTY GOOD SPOT, AND HAVE THEIR HEAD ON THEIR SHOULDERS RIGHT!  For that I am BLESSED AND GRATEFUL FOR SURE!!!! Have a good weekend everyone!