Mom - Lewy Bodies Dementia and Missing her Everyday!

Had it not been for what we felt was Lewy Bodies Dementia, my Mom would have been 83 years old today!

It seems as if just yesterday she and I were planning a night away for her birthday, to the Casino!
The last time was around January 2016... and she passed away in June 2016. It took her so quickly, none of us had time to even give "thought" to how ill she was, so quickly, without warning.

Unlike some other Dementia's and/or Alzheimer's, some live for years with them... But, it took Mom so quickly, and I watched what seemed like Hour to Hour her "getting further" and further away...

Love you and Miss you Mom, each and every day!

New Clinical Trials - Parkinson's and Gastroparesis Awareness Month and UC(Ulcerative Colitis)

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Posting by and written by Pamela Steele©

#BLUEUP, Stomp Out BULLYING Official Day October 1,2018!

https://www.stompoutbullying.org/campaigns/world-day-bullying-prevention/

This is SUCH AN IMPORTANT SUBJECT, NOW WITH SCHOOLS BEGINNING ONCE AGAIN, WHETHER ELEMENTARY, JR. HIGH, HIGH SCHOOL, COLLEGE, WHETHER IT'S A "NONPROFIT" OR JUST A REGULAR School sponsored by our states, local governments, and our National Government, BULLIES EXIST! Not only IN SCHOOLS, but in the WORK PLACE!

We see this type of problem everywhere, whether it's a "hate crime" which to me all Bullying types of things are 'HATE CRIMES" of a sort... We know that all too often, kids "see and hear" things at home, or other places, then "bring that type of thing" to school with them"...

whether it's because you "dress different", talk differently, go to a different church or don't go, whether you have one color of skin or the other, whether your "schools" are the "name brand" or "Wally World" brand... whether you "buy your lunch" or get a "free lunch or breakfast"... what "side of the tracks" you live on, whether you are "too thin", or what some consider too "large"... maybe you don't "go to the salon" and have your hair cut, or maybe you can't afford glasses or contacts that cost 100's of dollars... maybe you are from a "one parent home" or maybe your "parents" are the same sex, whatever it "is" you can bet that their some is kind of person or group that wants to Make you feel "less than", that you are "weird", poor, or don't dress well...

or maybe your parents cannot "afford a new car for you to drive to school", so you ride the bus.... as I said, whatever it is, you can bet "someone" is out there just waiting to make someone feel "lousy" about themselves. Often times the "very ones" that are being "bullies" are the ones that could be "getting bullied", or abused at home, or somewhere else. So, it takes even more of an effort on the part of us, that "hate the idea" of someone making fun of a person, or talking down to someone, or calling them names, or talking about how "their home life" is strange... REMEMBER, THAT PERSON HAS FEELINGS, EMOTIONS, AND HURTS JUST LIKE IF IT WERE YOU! So, be the better person and "step up" and tell them that you won't stand up and listen to someone being "bashed" either through words, actions, being treated as if they are not "human"....


My daughter and I just talked about this, just this morning. As her boys begin school this week, "most of the time" "boys" don't care what kind of "jeans" you have one, if your shirt buttons up, or is a T-shirt... etc... but "girls" can be so terribly cruel... boys can also, but girls tend to be those that "put down" someone for the way they dress, talk, look, and act a bit differently. I know that the "internet" is awesome in ways, but in other ways, it's created a way of "hateful" and harmful things to be said and done, and can be "sent out" with 100's or 1,000's of those to see it, within the blink of an eye....

So, as the new school year comes, and as I recall being a bit "overweight" and not being allowed to be in the band, or do some of the things I wanted to do, because my Dad was "too overprotective", he worked nights most of my Jr. High and High School years, and he just "didn't trust" anyone, and I don't think even trusted me... so I was "teased" due to several things over my years in school... but now often times it's a great deal more than just a bit of teasing, and it leads to kids committing suicide or harming someone, due to that "teasing" and abuse..

We have always been an organization for kindness.

The types of problems we tackle may have changed over the past decade,
But our passion has never wavered.
Ours is a higher purpose.
We work so that youth may stand tall and be respected.
With our help, youth are kinder. Schools are more inclusive.
Communities have more equality. Society has more unity.
So that, a culture of cruelty can become a culture of civility.
So we devote ourselves to breaking down barriers, we give voice to the voiceless.
We give belonging to those feeling left out.
We welcome diversity and inclusivity.
We work shoulder to shoulder in unity.
We empower the fearful to be fearless in this pursuit.
And together we will find the answers, to change the culture, for good.ption

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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

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.

Neovacs Announces the Results of its Phase IIb Study for Ifnalpha Kinoid in the Treatment of Lupus Which Allows to Proceed With the Clinical Development into Phase III

Neovacs Announces the Results of its Phase IIb Study for Ifnalpha Kinoid in the Treatment of Lupus Which Allows to Proceed With the Clinical Development into Phase III

https://www.lupusresearch.org/neovacs-announces-results-phase-iib-study-ifnalpha-kinoid-treatment-lupus-allows-proceed-clinical-development-phase-iii/?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+lrinews+%28Latest+News+from+the+Lupus+Research+Institute%29

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.