Wednesday, September 14, 2016

"Pain Patient Bills of Rights"

In Honor of Pain Awareness Month Here is one "Chronic Pain Bill of Rights"







Brought to you by "Pain Doctor" http://www.paindoctor.com



Many may think some of this is just "a normal way it should be for those suffering. Yet, you would be shocked at those, even medical specialists that STILL DO NOT BELIEVE how badly Chronic Pain can be, and just how it steal your entire quality of Life!

Monday, September 12, 2016

NPR - Trying to Find Solace from Isolation - A support Group

I have a question for EVERYONE that is either interested in an "online support group for chronic pain and illnesses OR having a Local" group here in my home town - all that are fairly close here in Ennis, Waxahachie, Ellis, Navarro Counties, I have given thought to this for a long time... here is an article from the National Pain Report. - I know many of you feel "isolated" and alone like I do when it comes to our chronic pain and illnesses. Even though we may have family or friends that "try and understand" it is NOT the same thing as having people around you that KNOW because THEY TOO are going through the exact same thing. With the entire ordeal now over chronic pain, and pain medications, and also the use in some states who have legalized "pot" - we still have much stigma, many that do NOT believe us, even the professionals, and trying to cope with that can be almost unbearable. You are already dealing with chronic daily illnesses and pain, then to try and go through "daily life" surrounded by many that may not support or even believe you is devastating. So, PLEASE SPREAD THIS AROUND!!! I will put it up on my blog, my newspaper, and around, but I also NEED HELP IN GETTING THE WORD OUT. If I have enough local people I may consider a group locally. If not, then something online, BUT something that truly gives everyone support.. not just the same old thing.., sometimes groups just don't make it because people become frustrated when they cannot really get the help they need, yet they are putting their time and effort into it. A couple of examples - in the past month, I have had my eye specialist, that I have been going to CANCEL ON THE DAY OF MY APPT. and NOT CALL ME! So, happens, I just had that "feeling in my gut" and since I have to drive about 15 to 20 miles to see him, I called the 2nd time and sure enough, they had "moved" my appt to 11:45AM and it was supposed to be at 2:45PM....NO ONE called at all... and then when they rescheduled it was going to be another 3 or 4 weeks AGAIN before he could see me! It wasted MY TIME getting dressed and ready, when I could have been doing other things, it put off once again an exam that is already way past due partially because of one of my Lupus medications that can cause macular degeneration, and my eyes and glasses are WAY OFF! I am having headaches, not sure if the glasses are related , BUT I got upset. So, I called another eye doctor in Waxahachie and he could see me the next day! But, I had another appt. with the plumbers, so they could see me that Friday! I got there, was checked in and lots of people were coming in and out, so it is a fairly busy office. But, they got to me promptly within 5 to about 8 minutes of my scheduled appt time... they were very accurate with the latest type of equipment, and in fact, so good, I did NOT have to go through old "dilation" of my eyes. He had some very up to date digital equipment that read everything very accurately. I saw him, he told me that I was okay, and no signs of the degeneration, BUT of course I have "cataracts" that are NOT near ready to be fixed. They are not "ripe" enough I believe is what they call it. So, I decided since my exam cost me NOTHING, no co=pay at all, and my insurance was giving me 40% OFF my lenses, frames, and 20% off of the "changing to darker" transitions I guess, and the doctor had put in my script all of that, plus my special prisms that have to be in them due to the double vision.... so I saved something like 160.00 or so on the frames, lenses, and all they needed to be added..., I was SO PLEASED AND WILL DEFINITELY RECOMMEND him to anyone in this area. His staff were extremely nice, they knew their "stuff" and I was so pleased that they were all so very nice and polite! Of course NOW I await my glasses, and did this the Friday before Labor Day, so I am sure it maybe the end of this week (hopefully) before I get them in... the prisms also sometimes take an extra day or so, so it will be 2 weeks this coming Friday. I hop they get here.... But that is JUST ONE EXAMPLE of us as CHRONIC PAIN OR ILLNESS patients (and others when it comes to their time) that is something I should NOT have had to deal with. Doctors EXPECT US TO BE ON TIME AND CALL 24 HOURS AHEAD IF WE CANNOT MAKE AN APPT. - but OUR time is NOT as important for them... Another example was the same as my own regular MD's office. I had an appt. week before last, I was already there and IN THE ROOM waiting for him.... and the nurse steps in to tell me he is "running behind" and would I prefer to reschedule? I TOTALLY understand sometimes emergencies arise, BUT again that has happened to me several times with him over the past couple of years.... those are things that are so frustrating, and especially when you are chronically ill, in pain, & already having been fatigued, plus dealing with showering, dressing and getting yourself to the doctors office.... so, I can see so MANY different aspects of how a online or in person group, potentially could be so beneficial to so many of us. As I told my daughter just this morning, with Mom gone, I have NO ONE HERE to talk with, visit with, etc... my daughter, and I are close as far as talking to one another at least 4 times a week, but she is 8 hours away as far as being physically close... my son is also working and does not live close by, so it is not like I had when Mom and I were within 5or 6 blocks of one another... I feel so very isolated and alone... plus I am dealing with a HUGE amount of guilt, due to issues my Mom left that I didn't know about, thus now I am having to try and cope with... and had I known before she got so ill, I may have been able to "fix" what she has kind of "wronged" leaving me hanging with it all... anyway, just a thought about a group and the article I read.,



Saturday, September 10, 2016

Grieving the Loss of a Loved One BEFORE they are no longer gone but you are a caretaker due to a chronic terminal illness...

I've been going through a really "odd" (pr what I felt was odd) kind of issue since Mom passed away in June. I kept telling others that I almost feel as if I am "still in shock" rather than in the "grieving process" and all these weeks and weeks, I kept "waiting" for those signs to appear, and they have in some ways...

yet I have felt angry and almost ashamed of myself, for "not showing" grief in losing Mom... daily now for weeks, I keep wanting to "call her" or run over to tell her something, and even though I am there almost everyday doing the remodeling, this feels different... then of course I realize no longer can I "talk with her here", call to see if she is okay, and usually have my own set of "life's issues" that I could talk to her about... 

well after much thought about it all, right now I am dealing with a great deal of almost feeling like "her life was dropped in my lap" kind of thing, but, I looked it up, and as I've mentioned, I had been "grieving" the loss of my Mom for months and months way before she was "bedridden"... 

and didn't know me, nor even where she was or who she was... I had that "grief" daily, from moment to moment, it was every changing, depending on what was going on at that time, or on that day... thus although it still sounds horrid, when she took that last breath, I felt at that moment "relief" for HER... no more suffering, hurting, crying, diapers, and lying in bed, she was finally "home" with Dad, and her family.... 

so here is one article I just read and decided I would post it...for weeks now I have felt like I am just "insane" yet what I've been through and am going through is all a part of the process... 


https://www.agingcare.com/Articles/grieving-before-death-terminally-ill-116037.htm


Thursday, September 8, 2016

FINALLY after MANY YEARS THEY SAY THE WEATHER EFFECTS PAIN, JOINTS, MUSCLES, BONES AND MORE.... CHRONIC PAIN!


This is NO NEW NEWS to me - I've told doctors since I was about 17 years old, with the start of migraines THE WEATHER HAD LOTS TO DO WITH THEM, and as the years went by and I developed so many issues with Lupus, RA, joints needing surgeries and anything joint, bone related, the weather DOES PLAY A PART in the pain, swelling and inflammation.






 FINALLY THEY ADMIT WEATHER DOES EFFECT JOINT, MUSCLE, BONE, AND OTHER TYPES OF CHRONIC PAIN!


http://www.bbc.com/news/science-environment-37301579


Knowing After all these years, that I should have been born a few years later, and I know I would be my dream job...

It has taken me 56 years, well guess a bit less than that since as in infant I would not have known this - :) to FINALLY KNOW why I WAS put on this Earth, and what my "calling" was - that I missed! It just "hit" me yesterday while in the quiet over at house #2 I painted.... first of all, I was born about 10 years or so too early. Had I been born in probably the 70's or so, then our knowledge about technology, computers, the advanced sciences we have now, from medicine, to phones, and you name it, I was a "bit early" on the scene to have those things readily available to me, unlike if I was about 30 years old or so right now. Or even out of High School a few years and then headed to college.

 I should have been AN FBI part of a team that does the "profiling" for our worst criminals, serial rapists, people that in their minds (and you must "get into their minds) to be able to capture why, where, how, when, and so forth they do what they do... their is always or usually a methodology to their "madness"... whether it be just pure evil, or having been abused, causing irreprible damage to their psyche, or they have multiple personality disorders, psychopaths, and so many other things that they either may have been born with, taught, brainwashed, or a numerous specific reasons why some do as they do harm to others and themselves.

 I know that may sound ridiculous, but I of course knew I would always be a writer, yet my true "profession" had life been a bit different, and I had been young enough for the technology that is now available to be here so I could learn about all of these, I surely would love to be one of these types of "profilers" that could help protect innocent victims from the harming of such horrific others. I am too "old" now, and with all of my own personal health issues, I would even if trained, not be eligible to serve at the FBI or such...BUT, I DO KNOW that LIFE gives you WHAT you NEED.. we are born for certain reasons, at certain times... and there is a reason I was born in 1960 - and at that time they did not even know much about "DNA" and the like.... 


http://www.apa.org/monitor/julaug04/criminal.aspx


http://www.forensicscolleges.com/blog/htb/how-to-become-criminal-profiler




 

2016 Flu Vaccine and the New Pneumonia Vaccine - Lupus and those with other Chronic Illnesses..,


 
 
 
I know some of us question if we SHOULD or SHOULD NOT get these vaccines....I get mine, and I also got my new Pneumonia vaccine, because it provides coverage for hopefully 23 types or pneumonia - the 1st day after I had them both (in the same arm due to my right shoulder being completely replaced, so my muscles are not very big on that arm) my arm itched and felt like it was burning. BUT, the next day, all of that stopped, and my arm is sore, but it does many of us that way. 
 
My pharmacist as well as my Rheumatologist recommended I get BOTH! Although we with chronic illnesses may not get "as much protection" as those without chronic illnesses, we still get SOME... since I have had "double pneumonia" at least 2 times in the past year or so, and then twice before, I decided I had better at least try and give myself a bit more immunity if possible.

Sunday, September 4, 2016

National Network of #Depression Centers presents the #DefeatDepressionDash 5K "Virtual" Run/Walk to support #MentalHealth awareness

The National Network of #Depression Centers presents the #DefeatDepressionDash 5K Run/Walk to support #MentalHealth awareness. Join us to support mental health fitness and help #DefeatDepression. Learn more about the event here:





Although WE have come SO FAR in the understanding f "Depression" and how it is not some type of issue that means we are for the most part NOT CRAZY, but is a chemical imbalance within the body, just like Diabetes, and many other illnesses, and chronic illnesses. YET, There is still such a STIGMA for some when it comes to talking with family, with counselors, in getting to groups that can help, going to get the proper medications, and not feeling as if you are nuts. 

I know I "hid" much of my own depression from my Father when I was in my very early 20's. He was born in 1923, and had watched his Mom (she was probably ill with cancer at the time or something terminal) on probably Morphine, which is all they had for pain control back then, and also did not know about it being possibly harmful as far as addiction... act "crazy" like "seeing things", or "talking about things that did not make sense and so on. Thus he even had her put in the Terrell State Mental Home I guess to "take the cravings" from her...what he was too young and at that time did not comprehend, she needed that medication to keep her out of severe pain.

My Dad NEVER got over the ordeal. He usually almost REFUSED TO SEE A DOCTOR, did NOT want or think he needed things like Blood Pressure Medication, and even tried to say that is was NOT DIABETIC, would not stay on the diet at all, and just about refused the tablets he needed. Thus he went into a Diabetic Shock several times and had to be taken to the ER... but when you look back at how different times were then, I guess it made sense.

No matter how much I tried to explain, he just had his mindset on NOT needing medications. I so wished we could have gotten through to him, but it was what it was... and he lived about 83 years... So, he always said he had lived and done all he wanted to do in life. 



Hashtags to use:
#DefeatDepressionDash, #MentalHealth, #Depression, #DepressionHurts


Sponsored and Brought to You by Cure Click!


Happy Labor Day - Journey's and How Our Lives Change Within Moments - Coping with Grief, Chronic Pain, Lupus, RA, Sjogren's and taking one step at a time....

I’ve felt so many different emotion since June 9th, when my Mom passed away. As I told my daughter Amanda on Friday evening over the phone, I think the entire ordeal is just now beginning to set in as reality. I catch myself wanting to call Mom to tell her something or ask her something… often times a week. Then it dawns on me, I cannot do that via telephone anymore…. I’ve put off really doing ANYTHING for just myself. I’ve been so busy taking take of all that needs to be done, from paperwork, to painting and working on the house there, that I have NOT had anything I really wanted, needed - other than the weather get nice enough and for me to be well enough to feel like going to Winstar in OK for a night. As soon as I can find a Sunday and Monday, here, there and between there is going to be nice weather I plan on going and it will be a “delayed celebration” of what would have been Mom’s 81st birthday on August 28th.

 But, it came to me a week ago, if I don’t find some other way to sit at my computer to “write” I will never get it done. Right now due to my neck needing surgery, and possibly my lower back, I cannot sit here for very long at a time…. plus when I have the surgeries, I won’t be able to sit like this, due to the neck brace for 6 weeks and so on….


SO, I decided I CAN sit on the sofa, with my legs up, where my ankle also does not swell so badly, and THERE in the evening after dinner when these two hellions (Bub’s and Peanut” calm down - one on each side of me, would be a perfect time for me to get some writing done, more on my blog, be able to get possibly back into my advocacy work, but MAINLY WRITE! I desperately NEED to finish my 3rd book, and after what happened to Mom from this past January till June 9th, NOW I totally understand “why” my writing was “delayed”…. it is clear as day, that I MUST include all of what Mom went through along with myself, as a caretaker that needs a caretaker…. and so much that no one even knows happened…the details of each and every day being there with her those six months, even sometimes changing from hour to hour…. I witnessed such an unbelievable change in her emotionally, physically and mentally… and that is why my writing was put on hold…. I have much more to add to that journey, for myself, for her and for my kids… and Grandchildren later and those to come… SO I broke down and ordered an Apply Air Laptop. I didn’t get the “biggest” or most expensive, because some of it I probably may never use. But, the screen is large enough, and I already love the way the keyboard is laid out and back lit….

I just received it late yesterday via Fed Ex, so I really have not had much time to “learn” about it…. I felt much “guilt” and hesitated at first before I bought it, BUT, I recall what my Mom said to me, several times, but moreover just before she began to really show the signs of getting so bad, so quickly, she made me “promise” I WOULD complete this 3rd book, and have it published. MOM was and will always be my “Greatest Fan”…. So, I want to fulfill that promise to myself and to her…

thus then I knew the laptop made perfect sense…besides, as much as I LOVE MY PRIUS! And planned on leasing another the first part of 2017, if I forgo that, and drive Mom’s Elantra, which only has 10,000 miles on it, and just needs a battery and tires (from lack of her driving it much) then I could do away with a lease payment and higher insurance… I have not made that decision yet, because that Prius was the BEST thing I’ve ever had in my life, as far as “items”…. but I have time to decide… so by then things will be more centered, and I will be able to make that decision. So, here are a couple of photo’s of my Brand New Apple Air Laptop!



HAPPY LABOR DAY!

Why Do We Celebrate Labor Day and How It Began! 



For a lot of people, Labor Day means two things: a day off and the end of summer. But why is it called Labor Day? Labor Day is a day set aside to pay tribute to working men and women. It has been celebrated as a national holiday in the United States and Canada since 1894.

­­
Labor unions themselves celebrated the first labor days in the United States, although there's some speculation as to exactly who came up with the idea. Most historians credit Peter McGuire, general secretary of the Brotherhood of Carpenters and Joiners and a cofounder of the American Federation of Labor, with the original idea of a day for workers to show their solidarity. Others credit Matthew Maguire, later the secretary of Local 344 of the International Association of Machinists in Paterson, N.J.

The first Labor Day parade occurred Sept. 5, 1882, in New York City. The workers' unions chose the first Monday in September because it was halfway between Independence Day and Thanksgiving. The idea spread across the country, and some states designated Labor Day as a holiday before the federal holiday was created.
President Grover Cleveland signed a law designating the first Monday in September as Labor Day nationwide. This is interesting because Cleveland was not a labor union supporter. In fact, he was trying to repair some political damage that he suffered earlier that year when he sent federal troops to put down a strike by the American Railway Union at the Pullman Co. in Chicago, IL. That action resulted in the deaths of 34 workers.


In European countries, China and other parts of the world, May Day, the first day in May, is a holiday to celebrate workers and labor unions. Before it became an international workers holiday, May Day was a celebration of spring and the promise of summer. Membership in labor unions in the United States reached an all-time high in the 1950s when about 40 percent of the work force belonged to unions. Today, union membership is about 14 percent of the working population. Labor Day now carries less significance as a celebration of working people and more as the end of summer. Schools, government offices and businesses are closed on Labor Day so people can get in one last trip to the beach or have one last cookout before the weather starts to turn colder.

 Links Below for More Information On the History of Labor Day


 

 

 

Saturday, September 3, 2016

ANYONE LOCALLY - (Ellis County TEXAS) Who maybe able to assist me with some painting and carpentry work!

I "realize" this is not a "usual post" for here, but I felt as many of us that are here from Ennis, may be able to point me, or point someone to me to help me out with these things. Mom passed away in June as many of you know from an extremely aggressive type of dementia. She was "okay" in January, and by May, was in bed, in diapers, and had no clue who I, nor herself was, or even could get out of bed. So, here is my "post" - anyone who maybe able to help out, please let them know to contact me - Thanks so much Pam Ravishing Rhiannon Steele -

I've just POSTED in a couple of Ennis TX and Ellis County TX posts about needing to hire someone to come in & help me finish the inside painting of the house I am working on. My Rheumatoid Arthritis/Lupus are keeping me from doing this myself, as I wanted to.I can barely hold a paint brush right now. by the way, the house is barely 1,000 sq. ft. & is only 2 bedroom, one bath. I've picked out all of the paints (or most of them and have began how I want it to look.)
 I am looking for someone to put siding on the one car garage, put up some new handrails on the front porch (about 4 or 5 steps) and then put one on the back porch (about 2 or 3 steps) down. I am furnishing ALL of the materials. I will want a new garage door put on the garage also. 
Those are my "MAIN" things If you know of anyone is my area, who can paint & do a bit of carpenter work, is reliable, please tell them to message me here, OR send me an email to redstangblonde@yahoo.com. I will keep an eye on that email address for anyone, who may help. I thought I would finish the painting myself, but there is just no way, with my health issues, I can continue to do some of it, but I need help. Thanks so much! 
There are some trees and limbs that need to go and an old piece of bus on my back lot, that is FULL OF BEES! They have been here all of the early Spring and Summer, and I've not been able to see the hive, but it must be huge! So, BEES and BUS can go, if anyone wants to haul it off for the scrap metal to sell. 

Friday, September 2, 2016

MIGRAINES - Clinical Trials and My Own Story...








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 I've not had the time to tell about Migraines and my pesonal atory, but they are one of the MAIN REASONS that the Disability Judge granted me my full disability. They literally took over my life from the time I was 17 years old... and although for some reason they somewhat got "better", then with the Lupus, RA, and so forth I have "worse" headaches and they are different, but I feel for ANYONE suffering from these. I had to either resign, or was basically fired from at least 5 jobs over the years due to Migraines.