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

http://www.lupus.org/answers/entry/are-flu-and-pneumonia-vaccines-safe-if-I-have-lupus

 

 

 

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.

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. 

My Daughter's Birthday was the 18th - Such an Awesome Daughter I have! COPING WITH LUPUS, RA PAIN IN MY RIGHT THUMB, HANDS, WRISTS, LOWER BACK NECK, HELL OVER MY ENTIRE BODY! BUT, somehow WE MUST CONTINUE ON... AS I TOLD MY PUPS THIS MORNING, I CANNOT JUST QUIT & TAKE A TIME OUT!

Amanda looked like a tiny baby doll when she was born. She was only 1 and a half inches long, and weighed a tad over 7 pounds. I wanted a girl so badly, and from the moment I knew I was expecting her, I KNEW she was a girl.

My son, who was 5 years before her, was just a little blonde (cotton headed) as they used t say, and small too. He started Kindergarten like only a week after Amanda's was born. It was amazing to have one beginning school and a brand new one at home! I've always been thrilled they were 5 years apart in so many ways. Amanda and Jason remain close and have as always. He was always the "big brother" who could watch over her, and they later in high school knew a lot of the same people, so when Jason and her left to go out on a weekend night, I knew he would watch over her.


Yet, it seems like just yesterday they induced labor with her.  I didn't have the certain "hormone" to cause me to go into labor with either of them, so they had to induce with Jason, and they just planned on it with Amanda. Now this was BEFORE the sonograms, and knowing what the baby was before it was born etc. Sonograms were only done then if they suspect problems, so with a "normal pregnancy" that was just not something they did.

My best friend from High School Carrie and I were expecting within 2 weeks of one another. They told me Amanda would be somewhere around the very last of August, and Carrie's little girl RaeAnn was supposed to be like 2 weeks BEFORE Amanda... but alas Amanda made her entrance into the world a bit early on August 18th, and much to our surprise Carrie's pregnancy went over by two weeks and RaeAnn was born right after Amanda by about 10 days or so. I can recall Carrie being frustrated that hers didn't come as expected and I had Amanda a bit early. Carrier ate enough Mexican Food to feed Ennis back then!!!!LOL!!!!!! She would eat anything Mexican 3 meals a day, every day of the year..... and I really did not have many "real cravings' BUT I could NOT STAND the smell of bacon frying or Joy Lemon Dish Soap, both made me sick to my stomach and even after I had Amanda, for a year or so, I could not stand the smell of bacon frying... and I NEVER got over the Joy dish soap.. I hate that smell even today after 31 years!!!!

I wanted to share that with all of you, and let you know I am still painting on "house #2" trying to get over there daily and paint. I have decided to "try" and move in over there in October... but that probably means me having to hire some people to help me finish up the paint, putting the fence up,  & of course the "list" can be endless...mainly finishing the inside painting and getting the floors in "decent shape" which does mean also I have to have new linoleum or something like that laid in the kitchen dining room, small bath and right at the front door entrance.

Right now there is an "industrial type" of carpet in the kitchen and dining rooms that is of course glued down, so trying to save the dining room would be a mess. The kitchen already had linoleum under it at one time, and the bathroom is tiny but I also "may" have to have some plumbing work done in the bathroom. The pipes coming into the bath through the wall to the commode are "rusty" and already leak a tiny bit. I know that even that floor at one time had been wet enough that Dad had to have it enforced when they put in a new commode years and years ago. So, I figure with what water damage might have been there and then when Mom threw a washcloth down the toliet (after she got so "bad" with the dementia) and I had to call a plumber I tried at 1st to unstop it, not knowing it was a cloth in there, but she over ran it twice at least until I finally locked it down enough she could not open that door. By then she could not even walk to the toliet and had a potty chair by the bed, but it also done damage to the hardwood flooring in the hallway by the bathroom... I am going to just do the best with it because I will have a carpet runner to go into that hallway, so it won't be that noticeable anyway... but I also think that old sink needs to go and be replumbed, plus if it CAN BE DONE, I would like to break up that old iron tub (which so many houses built around the early 50's had those iron tubs, with the porcelain over them... so that tub has lost about all of the porcelain, plus I want a shower only, that I could just step into, and have one seat in it... BUT, to break up that old tub with that small bathroom is a freaking chore!!! We did it in this house, and put my "big honkin tub/sauna/shower" in it... and I still love it, BUT hell I use the shower, and nothing else really...

I cannot sit down into the tub really or a may never be able to get out, and with it just being me now, it is really way too large for now how it is used... it really is a shame, because one of my reasons, was to use the whirlpool, sauna etc... for my joints and muscles... but by the time I have had all of the surgeries, the strength it would take me to sit down in it, then try and get back up, well I would fear being here alone, and not able to get out.... I still love that huge shower, tub BUT ALSO, IT is insane to clean... I keep it mostly clean since it is just me now, and I spray it down with the Daily Shower Cleaner, which keeps it dry, and it keeps me from having to scrub the heck out of it so often BUT, it still has to be cleaned, and it's a job....

I have to literally get into it, to be able to clean it properly, then keeping the mold and mildew out of it, I keep diluted bleach that I put around the places because certain spots if they stay wet will get to be a mess to clean.... so it takes work to keep it clean and free from lots of germs and so forth....LOL My DOGS probably enjoy bathing in it more than I do..I can put them in there, they have plenty of room, and I have my shower nozzle that I use so they kind of get a massage, then I can have them almost dryed off completely before letting them out... so that way they don't slip on the hardwood floors when they get out... they used to chase each other after a shower, and one time Tazzy accidentally fell going around a corner, because her feet were still wet and she had a hip that hurt her for weeks... so I have to dry their feet before I let them out of the bathroom...

NOW AS FOR ME........  I AM TIRED, I FEEL LIKE I AM ALWAYS RUNNING BEHIND... I HAVE MORE PINK, BLUE AND YELLOW STICKIES IN FRONT OF ME THAT I CAN EVER GET FINISHED WITH... I AM STILL TRYING TO GET OVER THAT ONE SPRAINED ANKLE... I THOUGHT IT WAS BETTER, BUT OVER THE PAST TWO DAYS, AGAIN IT SWELLS LIKE A HUGE GOOSE EGG ON THE OUTSIDE, DOWN TO MY LITTLE TOE AND UP MY LEG A LITTLE... I thought it was better.... hahahaha...

 I should KNOW BETTER!!! I NEED to have my pain pump upped, but I also need to see my Rheumatologist... neither know (well my pain doctor found out yesterday) that Mom has passed away, and that NO I am NOT OKAY, BUT I'VE NOT HAD THE TIME NOR STAMINA TO DRIVE TO DALLAS FOR DOCTORS APPTS~~!!!! While Mom was so sick half the time I "forgot" my 3 boluses a day for my pain pump SO it still has more medication in it than it would have had I been using it as I usually do.... but AFTER WATCHING THE PAIN MY MOM WAS IN.... I kind of WENT NUMB WITH MY OWN PAIN I GUESS... even when I SPRAINED BOTH ANKLES THAT SUNDAY OF HER VISITATION, I REALLY DID NOT "FEEL" THE PAIN.... but I WAS IN SUCH A SURREAL, AND SHOCKING SPOT, I JUST FELT NOTHING... MY PAIN, EVEN THOUGH I HURT LIKE HELL, SEEMED NON IMPORTANT.... Thus my reasoning for putting off my own Pain issues....

I AM BEGINNING AGAIN NOW TO KNOW I NEED SURGERY ON MY NECK, I NEED MY PAIN PUMP UPPED, AND WE NEED TO CHANGE MY RA MEDICATION OR DO SOMETHING BUT I just do NOT have the STRENGTH NOR WHAT I FEEL THE TIME... to spend on those things... like a couple of weeks ago, my Chiweenie, Bubs, broke a front nail on a front paw off below the quick... well it was MY FAULT... I always DREAD TAKING HIM TO THE VET... he usually puts up a fight, and we have had to muzzle him one time before... so I HATE HAVING TO DO THAT... so his nails get longer than most women's before I take him... and again they were way too long, and then he limped around for over a week because of one broken so far down into below the quick.... I finally took him in, and the last two times I've held him, and let the assistant just talk to him, while the Vet cut his nails, and we didn't have to muzzle him and in fact he did great.... so I was grateful and am going to try and keep it up and get them cut before they get TOO LONG!!!!



ANYWAY, LIKE NOW, MY OWN PAIN IS HORRIBLE... BETWEEN MY RIGHT HAND, THUMB, WRIST, AND THOSE JOINTS BEING IS SWOLLEN, I CAN BARELY TYPE, MY FINGERS GO NUMB NOW, THEY HURT LIKE HELL, AND THEN MY NECK SHOULDER AND LOWER BACK JUST HURT SO BADLY... IT IS ALL I CAN DO TO SIT HERE AND TYPE...


YET, as I typed in my Title, we cannot just sit down, and take a "time out" for many reasons... it is up to ME, for things to get done... whether I DO IT MYSELF or I HIRE SOMEONE... somehow all of what needs to be done, are things that have to be done, no matter the illnesses, pain and so forth....

One of the guys that was two years older than me died this past week! He was only 58 years old! By just looking at Sammy, no one would have ever suspected he had any health issues... I'm not sure exactly what happened, but my feeling is that maybe he had some type of cancer....

So, we MUST LIVE EACH DAY, EACH HOUR, AND EACH MOMENT LIKE IT IS OUR LAST!!!!!

Monday, Rain Finally, Catching Up, WEGO HEALTH 2016 AWARDS! and my Nomination - Check it out!

Rainy here finally, not a hard rain but nice and slow like we need... not a great deal either...but it appears "if" things go as they show, we will be getting more over the next few days... I am concerned about thunderstorms, mainly hail... I am in the process of going to paint for awhile at house #2, but I certainly don't want my Prius hailed on... that would be a disaster... but I don't think hail will be an issue, maybe lightening and thunder but so far this morning, we have not had any of that just lots of heavy rain clouds, much COOLER temps thank goodness, I had to turn off my A/C for a bit this morning... so that is a good thing... anyway, got some stuff done yesterday at home #1 - I had some paperwork to do, had a few other things that were beginning to pile up on my desk, so I got some of that done...

 I've got to take the Elantra over to Wal-Mart - depending on the weather, maybe tomorrow, the battery has had it, and I can charge it, but due to it sitting and not being driven any, it runs down... but it needs to be changed anyway. It already was old and not working as it should... so I need to take back some "horrible" paint brushes I made the mistake of buying at Wally World and I am taking those back , plus I had bought some french onion dip mix at HEB, and two mini rose bushes, that had for $1.99 each last week... it was kind of "odd" to me that they had them marked down so low... they "appeared" to be healthy!!! BUT, within 2 days, one of them just died... no apparent reason, I had not done a thing but put a bit of water on it, and it just died... the other one, was not looking the best, but I decided to re-pot it to see if it would be okay... hell NO, it died also... the onion dip package had a hole in it, so it is hard as a brick... and I believe I had mentioned those things over the weekend... but I threw away the small pots the roses were in from the store... I have the receipt and the little plastic explanations about them, and one of them I still have the paper that was around it, but I only have the one bush left, that is already in another pot, dead... but I REALLY don't want to go the the trouble of taking that dead rose bush in... so I am going to take the receipt, the dip mix, and tell them about the roses... I THINK THEY KNEW something was WRONG WITH THEM... SO THEY MARKED THEM DOWN... to get them out of the store before they died... somewhere someone either put something wrong on them, or did something, and they knew those bushes were going to die... I just can't believe both of them died within 2 or 3 days of me bringing them home... I have two from a couple of years back and in fact both of them are on the porch and both have blooms on them right now... other than that if you have TIME -

PLEASE GO TO THE WEGO HEALTH NOMINEES FOR AWARDS THIS YEAR AND put a "good word" in for my nomination... I have not said much about it, but I am nominated right now for my blog, and there are many other awards that you can be nominated for... so not just me, but anyone and in any of the categories you feel should be recognized and get an award (I would get a special graphic to put on my website, plus they send the winners each year a box full of goodies, balloons, a little award, T-shirts, pens etc... I actually also judged the past two years for them also.. so they may ask me again to judge... that was kind of fun.... Here is the link and I've got to get my butt in gear and get to painting....

Link to my WEGO Nomination and "bio"!

 https://awards.wegohealth.com/nominees/1998

Celebrating My Mom's Life on Her Birthday that would have been on August 28th... and Life..,

Well since the weather is not looking good for our area nor the Casinio's area for tomorrow and Monday, and I don't cherish driving in Dallas, through Denton with GOOD weather, so much road construction last time I was through there, plus Mom's Birthday would be August 28th, SO in order to celebrate for her as I said in my earlier post, I switched to go that day on her birthday! 

I think she would be or is "thrilled" that I go and have all of those good memories of us going and coming back from Winstar. So, I do look forward to reminiscing about our trips... that was the ONE thing Mom did enjoy doing... So, I am off to try and get some painting done... I am still not feeling like "myself"...I can't explain it, but I just feel like I am having issues with that vertigo mess, and I notice if I bend over, then stand up my head feels "full" so maybe even the allergies and sinus stuff with the weather as it is... but the plants and grass and trees are so happy! 

They just need A GREAT DEAL more rain BUT SLOWLY... so I wish all a good weekend, I am going to try and get a few things done over at house#2.... and talking about that... I bought those 2 "mini rose bushes" lst week at HEB. They had them marked for $1.99 each... which they are usually at least 5.99.... so I wondered what the deal was... they all "looked" great.. but within 2 days of taking them home, the lilac colored one appeared to just have "died"... and the white/yellow colored one does not look much better. I even re-potted them thinking it is because they don't have proper soil. But, I am so mad at HEB - I BET they KNOW something is "wrong" with them, so they marked them down to get them out of the store, and then we buy them and they die... I have two others from there from a couple of years ago, and they are blooming right now... so I know something had to be wrong for them to mark them that cheaply and then one just die within 2 days... also I bought a packet of "French Onion Dip" mix... like McCormick's I think that same day. 

Well, I started to open it after I got home to make some, and the entire packet is just hard as a brick, like the stuff is old. Well, I found a tiny tear in the packet, so I am sure that ruined it... but how can they NOT find these things out... I am willing to bet a box of them got "nicked" when they were putting them on the shelves... I've seen them do it before... and now I have to take that back... another warning, DO NOT BUY paint brushes from Wally World! They stopped carrying the "Purdy" brand which we bought over 10 years ago, and the brushes are still in fair shape... but I felt I needed 2 new ones, and I bought them at Wally World, and they were not "cheap" - just about as much as a paint store with a sale... so I used one of them, and began to find bristles coming out in my paint dammit. I hate that... as old as my other ones are, never have I saw one bristle come out in my paint... 

so the other ones I bought from there I am taking back and telling them they are pricing them at well over 10.00 and they are worth about 2.00 if that much... LOL!!!!! I HATE having to take stuff back, especially when it is something that is "their fault"... it is a pain in the butt, and takes up MY TIME having to go back and get a refund...anyway, I got my "good brushes" and some paint yesterday that was on sale.., so I am back in business.... I will take more pics as the rooms begin to come together....

BRAND NEW DIABETES CLINICAL TRIAL BOUGHT TO YOU BY CURE CLICK!!

A New Digital Research Study is Available for #Type2Diabetes! People with an A1c value higher than 7.5% and who own an iPhone may be eligible. Study is Online—take the surveys at home! Click here to Learn More. 

 

 

 

 http://curec.lk/2ahx2e2

Did you know that those of us with some of these autoimmune Illnesses have Higher Chances when you have Lupus, RA, and/or take certain types of medications such as any type of corticosteroids...

 

 

#Type2Diabetes #diabetes #T2D

As My World churns and turns, is it the Lupus causing my headaches and nausea, is it nerves, stress, and still having too much on my plate... or just how it's meant to be.....

I know this probably does not look all that “great” right now! BUT, when I finish and put the “chair railing” up between the white and the colors on top, I can already tell they are going to turn out awesome… the plants are some I have taken over there and planted.. Mom was never a big “garden” person, not even house plants… But, DAD LOVED the garden, from rose bushes, to a full garden when I was small, he raised onions, potatoes, fresh green beans, and all kinds of veggies, plus had peach and plum trees, and made the BEST PLUM jelly around… 

 This is the kitchen and it was ALL GREEN! So, it now will be a darker blue, light blue and white. The living room is going to be tangerine, with white at the bottom.....




I have red and "gold" picked out for the bedroom because it will go perfectly with my brand new curtains, comforter set etc that is on my bed. But, I am going to "try" to do what we did before... and that is paint the upper wall the red, then take a newspaper, or sponge (the newspaper actually works better) put a bit of "paint glitter" in that gold, and then sponge it over the red... the hallway we did that way is my faorivte room in the house!!!! I had "seen it" in my head before we ever did it, and it turned out even better than I ever expected!


OH and by the way, thee are my 1st photo's with my "I-Phone".....

Plants some from Mom's funeral I re-potted, and then I bought these two mini rose bushes (that I am not happy with...got them "on sale" at HEB - AN one of them, the lilac one, all of a sudden a couple of days ago, just looked like it was going to keep over... I re-potted both of them yesterday, so we shall see... but I am guessing that could be why they were so inexpensive...have to wonder what is really wrong with them????

LOL, we got so spoiled that none of us would eat “store bought” jelly for years…. and he also raised quail back then… he would keep a couple of chickens (hens) and take the eggs out of the quail nests and let the hens sit on them… the quail sometimes would injure their own young ones, thus letting the hens sit on them kept that from happening… so there are MANY MANY great memories, inside this house and outside in the yard for sure… Dad loved everything outdoors, and I took after him in that realm in many ways… I LOVE doing my own lawn work, when my body and the weather allows me to…. I am finding out more and more each day, just how badly the sun effects me, especially physically… and the strange thing is I have the BEST TAN in places, my arms, my legs, and some on my face from just driving my car… I never had the windows tinted in my Prius since I leased it, and believe me I WILL HAVE THEM TINTED IN WHATEVER I DRIVE NEXT!!! It really does almost feel like someone is burning me, just the sun coming through the windows and windshield… anyway, I am kind of “blah” today. I have a damned headache from hell, and my stomach is upset again… which seems to be an ongoing pattern with me lately… about the last year really, I am constantly having to take prescription nausea medication and then try to calm my head down… it is insane and I know the high heat, humidity, and then me painting with that brush is not helping. It puts such a strain on my neck and shoulders… LOL, one arm gets too “weak” so I have to change the brush over to the other arm, good thing the ONE thing I can do is paint with either hand… LOL…. 


anyway, I hope all is well in your world… I am still battling with paperwork, and need to find (I may go to Office Depot) and see about shredding services… between my own, and ALL I did not know Mom had saved… I will NEVER finish shredding ALL OF these pieces that must be shredded. So, I need to do that plus I need to make sure the funeral home let the monument place know about engraving Mom’s date of passing away on the monument. I found out that the “special granite” almost a pinkish color came from I believe Australia or somewhere overseas, and it cost a small fortune. It took them over 6 weeks just to get that piece of granite here to be engraved when Dad passed away… in fact I was going through some papers and found the original receipt from when my Mom purchased it…. Anyway, I am not feeling any better, so I think I will sit on the sofa for a bit, and see if in an hour or so, my stomach and head will calm down so I can go over and paint… and Sherwin Williams starts their new sale tomorrow with 35% OFF!!! PLUS I have the “discount perks” so I get another 10% oFF!!!!! That adds up to a lot of savings as high as the paint is now… MG unbelieveable!!!! A gallon of any type of semi gloss is regularly at least 65.00$$$$$ I almost fainted when he told me the regular prices… but it is that way everywhere, whether it be Lowe’s etc… plus I can get the proper paint, right here in town, know it’s great quality, and don’t have to run back and forth to Waxahachie for paint… I AM going over there tomorrow for an eye doctors appt, so I am going to try and go early, and to Lowe’s to price fencing, and cedar to redo the railings on the front porch, and then put one in the back….. on that porch… so I hope to have some prices down etc… I NEED to call my hair dresser, my hair is a shaggy mess LOL, in the front, it has gotten so long, I can’t do a thing with it, so between trying to keep my glasses on (they are worn out) and my hair out of my eyes, I just about go nuts…. I made a crock pot (slow cooker) of “Mexican style pulled pork” last night, and it turned out awesome! I had already made pulled chicken with Mexican spices, then I also made some with Asian spices and am freezing them after a meal or two… that way I can “restock” some of my easy meals to heat and eat… I NEED to make my famous chili, I am I think down to one small freezer bag full…. so it’s time to do that also…I had done some pulled chicken several weeks back but barbecued and it also is awesome… gotta say I LOVE MY SLOW COOKER!!! My only wish is that damned thing was NOT so HEAVY! By the time I get everything in it to cook, I almost can’t lift it up and it is already heavy enough…..

Sunday's A.M Addition to my Newspaper All things Autoimmune, Chronic Pain and Dementia! And Suggestions?????

My Brand News Newspaper for Sunda AM is OUT and Here is the link:


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


This is MINE to Add, change, or whatever I feel my audience" wants to read, see, hear more about and so forth (as far as health issues go) PLEASE FEEL FREE TO MAKE SUGGESTIONS...if yu have another health issue, or would like to see more about something in health, let me know and I can go in and get more article and information about those topics as well as the ones I am giving you!

I am DOING THIS FOR YOU!!! "My "Audience) So, post, email ,speak up even post on the paper itself and give me your personal thoughts and issues!

A bit of catching up, been once again "ill" with "something" a Flare possiblly, but fever, severe body hurting all over, severe headache and NO energy!!!!!

Dropping in quickly to say I am still here! Been sick for two and a half days at least with yet again, fever, severe body pain all over, severe headache, and neck hurting, and my lower sides...plus NO energy...it was as if someone took a needle stuck it in e, and drained EVER BIT OF WHAT LITTLE BIT OF STAMINA I HAVE AND TOOK IT ALL AWAY! I could barely go from one room to the other at my house...so needless to say, I am BEHIND on painting, and everything. this house needs to be cleaned, including dogs bathed, and so forth... and I am way behind on getting the painting done... and I had been on a roll... not sure if it is just the heat that ha s zapped me, even though I have tried not to be in it a lot, or possibly just a continuing LUPUS and RA flare...


PLUS my ankles are "better" but that right one continues to swell if I get up and stand, walk on it a great deal, like painting, standing on the short ladder, or cleaning house... and I am sure the heat does not help it either... I felt as if someone had taken a ball bat to me and beat the hell out of me... honestly...So, I am headed to go and paint... and hope I can continue to "feel well enough" to get somewhat caught up o that, then tomorrow spend the day bathing the dogs, cleaning and and showering me! Anyway, keep my in your thoughts, and keep my kids in your thoughts and prayers...I know they have a an awesome trip to the river, for a week, but will be driving home I think tomorrow with their huge travel trailer in tow...so I wish them safety in getting home... 


This damned Lupus, RA, Sjogrnen's and the like all added up can really put a kink in your life, and you never know when it will hit you like a ton of bricks...

FIRST YOU AND DIRECT SUN! My Week has been NUTS!!!! Between bill pay day, the heat, errands, and trying to get the #2 house painted... I thought I would say hello...and tell you a couple of things.

Our "fortunate" temps BELOW that 3 digit mark are about over... the next 15 days or more show 100 plus degrees... so since it is just the 3rd of August, I can say I feel lucky, it could have been a month ago, BUT I HATE this kind of heat! My skin feels like hot burning coals are on it, just having my arm in this type of weather. Between the Lupus, and then the Prednisone, and other meds that effect my skin, I cannot take over a moment or two in direct sunlight.... again though we are fortunate :)




http://www.msn.com/en-us/weather/today/Ennis,TX,United-States/we-city-32.329,-96.624?iso=US

And SPEAKING OF SKIN, AND HOT SUNNY WEATHER - You Guys and gals out there with ANY OF THESE SKIN ISSUES, ILLNESSES, MEDICATIONS (Lots of meds can make you very vunerable to a burn within moments - many of your "tetracycline antibiotics", many of our blood pressure meds, and if you read your labels and look your meds up, they will give you a huge warning about sun!!!!!

So, be safe! I know I "try" to do anything outside, either before the sun arises, or after it is down below my tree lines, BUT today, I went over to house#2 and had to water some of the plants I've put out... and I could not avoid the sun TOTALLY... and it honestly felt as if my skin was on fire, just letting my arms be in and out within seconds!!! So, sunblock!!! and/or all ways you can protect yourself... my years of going out to the lake and tanning when my kids were little, or mowing my lawn in my bathing suit top and shorts, are long gone.....

 

Here is a partial list of the many medications and lots of information about medications, sun, and what you should do and NOT do!

http://www.medicinenet.com/sun-sensitive_drugs_photosensitivity_to_drugs/page3.htm

Donating Your Organs for Research, Burial or Cremation, Chronic Illness, how life has so many turns, & trying to cope with Lupus, RA, Chronic Illnesses, and living..,

I've had something on my mind, especially after going through what I watched my Mom go through, along with knowing my own health issues, my Grandparents health problems, and family backgrounds. Since I am already an "avid" advocate as far as Lupus, RA, and other Autoimmune Illnesses, as well as Arthritis and now Dementia's.... I've had something on my mind. For some, this may "gross" you out, but for me (and this is after a bit of thought), I feel like when my "time comes" I maybe able to make one more extremely beneficial act, that could help others in the future, even my own family down the line someday. I've been giving serious thought to "donating my tissue and/or organs" for research. Knowing the chronic diseases that I have, and that effect my own family, and seeing that "dementia's" tend to also run in my family, especially my Mom's side, I feel like that is a way, that I maybe able to help stop, find a cure, or give hope to the millions of others out there that suffer from these horrendous illnesses. This is a subject, that I am sure many people don't want to think about... but once you have had someone so close to you and you watch them go through some of these horrid illnesses, you have a deeper sense that you "need to do something" for your kids, Grandkids, and so forth on down the line, along with so many others that need to also find a reason why many of us suffer from them, along with how to "stop" these before they even happen, or "cure" them, put them into remission, or find some way to change what so far we still are fighting with. I also think after seeing the expense of a funeral, and fortunately my parents already had their things in order for that part of it, but the expense of a burial plot, and then the casket and so forth, I can see me doing a cremation, rather than going through the motions and expense of the things that go along with being buried. Now, I am NOT trying to gross anyone out, nor am I (hopefully) upsetting my own family with these thoughts... for they are just that.... 

things I've had time now to think about, and do some research on... and if I could help to make this world a better place in some way, then I feel I should do, just that. I also see that there is such a "guilt" at times, and a burden, even with funeral arrangements... I know that many go through thinking, well I cannot be "cheap" and not have a beautiful casket, or a huge amount of flowers, or have a very nice memorial service... yet when it comes down to it, the person, such as anyone close to you, does not care, more than likely if they are in a "pine" box, like used to be, or in a 10,000 casket, that is going to be in the ground, and certainly of no benefit to that body, for your soul is long gone, nor does it help the ones you leave behind. 

To me, leaving a "legacy" of being a decent, caring human being, that tried their best to love their family, take care of them, and know in your heart, you did everything you could to do the "right" thing, is much more important than a 750.00 flower casket arrangement, that shall wither and be gone within days. Anyway, I've not been here "online" much. And I will be in and out for awhile as their are things to be done... and things for me such as even my neck surgery, that I've put off now almost a year, that I do need to do... so as I make a list of the crucial issues, and line up what is important, and what is not so important, I will be here, some, and then be out and about getting other things done also. I have to get my eyes checked. 

My up close vision has gotten worse, plus I've not had that test due to me being on Plaquenil now in over 2 years, and I should be doing that yearly. So, that is one of the things that I need to do hopefully this week, and then of course the paperwork thing is almost a "hurry up" and then a waiting game. There honestly is no real "hurry" in any of it, other than how quickly myself and my kids want to work on it. Anyway, I may be away for again most of the week. I've got LOTS of painting to do, and getting those hardwood floors done... not sure yet exactly what I am going to do... I don't think completely redoing them is necessary... I think if I can get them cleaned properly, then apply the proper wax, and buff them, I maybe able to get by with that rather than go through the entire ordeal of "sanding, etc... on them..." 

but one day and one step at a time... with the weather in the process of getting HOT, lots of things will have to be done "around the heat"... thank goodness a good portion of things are on the inside, rather than the outside for now.... keep my family in your continued thoughts and prayers... we are all just in still kind of a shock, and somewhat of indecision on some things... yet it seems all of us tend to be on the same page... so that is a good thing... Rhia

Dementia, Alzheimer's, "A Quilt to Remember", getting back to somewhat of a normal, life, Advocacy work, & making a "Quilt Block" in Memory of my Mom & both Grandparents

Alzheimer's, Dementia, Quilt to Remember,Mom, my Grandparents, and for our generations to follow


YES! IT is 4:30AM and I am UP!

 I have not been able to sleep again in a couple of days. I am not sure if it is just being "down" during the day with my ankle, or feeling a bit "edgy" that I am NOT up and doing some of the things I need to be doing. Both pups have also been restless, especially tonight. In fact the little one my Peanut Holy Terrier, :) was a bit sick to his tummy. But, that pup will EAT ANYTHING! I have to constantly keep a watch on him...because if he can get his paws on it, it's going in his mouth, and more than likely he will eat it. I hope it is a "puppy thing" for I know my Tazzy did that when she was little. But after she turned about a year old, she got out of that picking it any and everything in her mouth. Plus he CHEWS on everything! My other two did, some, also when they were in their first 6 to 9 months, but after that, they began to ONLY CHEW on what they were supposed to. I hope Peanut does the same. But he is definitely, "a pup of a different color" for sure...LOL! Stubborn as a Mule, yet he is coming out of that a little now. He also thinks my hands are "chew toys"...so we have really been working on NOT "chewing, nipping" at Mom's hands and on Bub's ears... They seem to get along good, but there are times since Bub's is older, he gets enough, so he puts Peanut "in his place"... he never hurts him, he just gives him this "look", and Peanut KNOWS to BACK OFF playing for now... :)

They both like me to sign to them, and I did finally get Peanut a "song" I made up, plus he already is getting a couple of nicknames, I catch myself calling him "Pea-knuckle" (spelling like the game Pinochle" - or LOL something I bit "off" color, since he was neutered, I call him "Peanut-less" at times.... LMAO! Well, believe me ALL of them have had several names and always learned that by either that name, OR my TONE or BOTH, either things were good, or they had done something "not so good".... just like kids, these fur-babies, seem although at times to continue to be fur-toddler's most of their lives... They have really been "trooper" though.

Through all of this with my Mom, I had to be in and out so much here at the house with them, and that was something they have not been used to, I know there were days they both could not wait for me to "cling" the keys and open the doors and both standing, jumping, barking, and crying for joy that "Mom is finally HOME"! So, it has been a difficult time for them, a totally weird schedule, and not our "normal routine", although I tried to give us "our time" each evening together... and then I know they have sensed me being upset, in a turmoil, and also both of them especially Bub's knows when I am not well myself, and it is almost like he "watches" over me, sitting beside me, and even at times he will be there, and he will just let out this kind of almost a "cry" wanting me to "sit down" with them, and be still for a little while. So, having me "home" the last couple of days to themselves more or less, and spending time down with my ankles, they have been in heaven right beside me.


Okay... now to another reason for this POST, I want to do a "quilt piece" for the "Quilt to Remember" tour that is going around the nation in honor of those who have had these horrid diseases of Dementia, and have taken away their minds, in so many different ways, time frames, and so forth. I had been an advocate already in many ways for the Alzheimer's Association but I had forgotten about the quilt. So, when I wan in getting information on where to donate in honor of a loved one etc, or in memory of someone, I saw that website about the quilt.

Since both of my maternal Grandparents had some form of Alzheimer's and Dementia, and now my Mom, I want to do a quilt piece to go with this quilt around the country. I've submitted my "story" and asked for instructions about the quilt block, which for an individual is 4 feet by 4 feet.

Since my Grandmother made MANY quilts completely BY HAND, not one machine stitch in them, and I have also been able to do a quilt, and have actually a oversized, probably King sized almost top finished for a quilt, I decided what better way to "give back" and also hope to help to find the reasons for these horrid, mind taking diseases, and give hope that we find reasons, find more help, have more research, find a cure, or find out what we can do to completely STOP some of these types of dementia's. I am enclosing the "link" here for this project. I have several ideas already and really already have materials etc, (some I found over at Mom's, and I think it is still good enough to use in the quilt) and am waiting to hear back on details about the quilt block and getting it to them -

http://www.alzquilt.org/

Here are a few example of blocks made by people for the "Quilt to Remember"

Created by Colleen Anderson,
Fargo, ND,
in honor of her mother, Patricia Kelso

 Created by Phyllis Bednarek,
Woodridge, IL,
in memory of her mother, Mary Estelle Ruppert 

 

Created by Bernadette Discon,
Jackson, NJ,
in memory of her husband, James Russell Discon

Created by Kimberly Fondaw,
Grand Rivers, KY,
in memory of her mother, Geraldine M. Brown 

ALL of these are from the website about the quilt! Plus there are many, many more that give me some wonderful ideas for doing one in memory of my Mom. 

To that Pearly White City.....

Again I want to come in and thank everyone for their love, prayers and support during such a very difficult time in our lives. Dad passed away 11 years ago, which seems almost impossible. In fact, it fell this year that March 27th, was Easter Sunday again, which was when he passed away. By the Lord's grace, He allowed me to take care of Mom, and be there to watch her leave this world, and pass onto where she was met with open arms by everyone who went before her. I had not told it here yet, but on that fateful Thursday morning, I went in to give Mom her "comfort" medications supplied by Hospice, as I did every few hours, and during that morning dose, I "knew" it was time. I had said that I would "know" somehow, someway, it would come to me, and it did. She seemed almost a bit more at peace in some way, yet, I could also tell she was almost "trying" to tell me. So, after giving her the medications, as I always did each morning early, I walked outside, around in the yard, just thinking, praying, and finding my own "way" also to make it through another day, and pray all I did helped her. When I came back in, I sat down beside her on her left side, and took her tiny frail hand in mine.

She never moved, and most of the time, even when giving her medications she would make a bit of noise or move a bit, so, all I knew to do, is what came to my heart. I began to sing a bit of several hymns that she loved to hear Dad sing. Of course "Pearly White City" was one that Dad always sang, and it was always requested that he sing many, many times at church, at other funerals and such, so that last chorus I began to sing of Pearly White City, this sense of calmness seemed to fill the room, and the tears flowed down my cheeks, and as I finished the last few words, Mom literally took maybe 2 breaths, and then just stopped. I sat there holding her hand, talking to her, and knowing, her pain, her confusion, and all she had endured was now gone. We are "selfish" as humans, and of course I did not want Mom to "leave", yet I could feel her within my own heart, and I knew no matter what her body was no longer able to do, she will always be with me, everywhere I go. I told others that it is almost like when I finished that song, it was Dad telling her to "come home". I want to thank everyone once again, and Joy it is so good to hear from you and your family. I truly would love to get to see all of you, it has been so very long.


Uncle Macon and Aunt Cleo were always my favorite Aunt and Uncle, and it was always a blessing to be able for them and sometimes your, your family and Mike to come also. Craig, thank you also. We have known one another since we were very young, and I appreciate your thoughts and prayers. Ron, I appreciate your prayers and condolences also, and it is funny it seems like just yesterday we were all working at EBF, or would be seeing each other in town, and although I've been back now for almost 11 years, I don't see many people, as much as I would like to. Thank you Jim and Frances, and thank you for the beautiful plant. I LOVE plants, so it will fit in very well with my collection for sure. I have to again give a huge thanks to Keever's, everyone helped me out and as always were so compassionate and caring. I thank Father John for giving the funeral service, and for all of the family and friends that stopped by on Sunday and Monday. All of you truly made this situation "easier" on our family.

We love all of you, and what a blessing it was to have my daughter Amanda and my Son In Law, Jimbo, and my two Grandsons here, plus having my son Jason with me, we even under not such great circumstances were able to have "quality time" together, and that is something we over the years have not nearly had enough of. I want to thank Family First Hospice for all of their support and comfort, for Mom and for me, as well as Physician's Choice Home Health Care, who were there to help me and Mom out for a few weeks before things had to go into "Hospice" care. I again are am so thankful and blessed. As one day, rolls into another, and as my heart is full with love, and as my mind and body try to "heal" long story, but of course I got sick, and was sick, mainly my Lupus acting up, but then I slipped on wet grass Sunday morning, and sprained BOTH ankles, the right one severely, so I am trying to take it easy for the next couple of days and allow my body to try and mend. -


Pearly White City Hymn Lyrics

There’s a holy and beautiful city
Whose builder and ruler is God;
John saw it descending from Heaven,
When Patmos, in exile, he trod;
Its high, massive wall is of jasper,
The city itself is pure gold;
And when my frail tent here is folded,
Mine eyes shall its glory behold.

Refrain

In that bright city, pearly white city,
I have a mansion, a harp, and a crown;
Now I am watching, waiting, and longing,
For the white city that’s soon coming down.

No sin is allowed in that city
And nothing defiling or mean;
No pain and no sickness can enter,
No crepe on the doorknob is seen;
Earth’s sorrows and cares are forgotten,
No tempter is there to annoy;
No parting words ever are spoken,
There’s nothing to hurt or destroy.

Refrain

No heartaches are known in that city,
No tears ever moisten the eyes;
There’s no disappointment in Heaven,
No envy and strife in the sky;
The saints are all sanctified wholly,
They live in sweet harmony there;
My heart is now set on that city,
And some day its blessings I’ll share.

Refrain

My loved ones are gathering yonder,
My friends too are passing away,
And soon I shall join their bright number,
And dwell in eternity’s day;
They’re safe now in glory with Jesus,
Their trials and battles are past.
They overcame sin and the tempter,
They’ve reached that fair city at last.

Refrain

Mom's Favorite Song

Candle In The Wind (Elton John - for Princess Dianna Tribute)

Goodbye England's rose
May you ever grow in our hearts
You were the grace that placed itself
Where lives were torn apart
You called out to our country
And you whispered to those in pain
Now you belong to heaven
And the stars spell out your name

And it seems to me you lived your life
Like a candle in the wind
Never fading with the sunset
When the rain set in
And your footsteps will always fall here
Along England's greenest hills
Your candles burned out long before
Your legend ever will

Loveliness we've lost
These empty days without your smile
This torch we'll always carry
For our nation's golden child
Even though we try
The truth brings us to tears
All our words cannot express
The joy you've brought us through the years

And it seems to me you lived your life
Like a candle in the wind
Never fading with the sunset
When the rain set in
And your footsteps will always fall here
Along England's greenest hills
Your candles burned out long before
Your legend ever will

Goodbye England's rose
May you ever grow in our hearts
You were the grace that placed yourself
Where lives were torn apart

Goodbye England's rose
From the country lost
Without your soul who missed the wings of your compassion
More than you will ever know

And it seems to me you lived your life
Like a candle in the wind
Never fading with the sunset
When the rain set in
And your footsteps will always fall here
Along England's greenest hills
Your candles burned out long before
Your legend ever will

Your footsteps will always fall here
Along England's greenest hills

Your candle burned out long before your legend ever will

"Dare To Dream" Sponored by Cure Click and About "Dreaming" and Clnical Trials

http://projectdreamnow.org/

If you are a research volunteer, share your story! Tell others what it was like.

If you don't know, but you're curious, check out the stories of real people like you, helping advance science.

Project D.R.E.A.M. Dedicated to Research Education and Awareness Movement

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Mom and Sharing a bit more.....

I was not sure about posting this here but it seems like the very best spot to let those who want to know about my Mom, Henrietta Steele. Of course this is Pam Steele, from the Class of 78, gosh a long time ago, LOL.... and many knew my Dad Minnis, that worked for Ennis Business Forms for 45 years, started at 16, and walked from Byrd/Rankin back and forth until he finally got his Dad's car (Model A) I think... anyway, back then it was still Ennis Tag. My Mom was having signs of "dementia" for a bit, but she is to be 81 in August, so "memory issues" are a part of that anyway. Yet, just this past January, she was still able to do much of her "daily stuff", cooking, cleaning, still in that little tiny house on Anthony Dr. - where I was raised, etc. 

But, within weeks, things went from "okay" to wait a minute something is very wrong. She was not able to "recall" how to put her car in drive, not able to turn on her oven, could not recall how to use the Microwave, and from there she quickly was stricken with what I feel is "Lewey Bodies" Dementia, it moves extremely fast, and her symptoms to be are definitely what I would say "fits".... both my Grandparents Rosie and Joe Svehlak, her parents, had Alzhemeir's/Dementia. So, it is not a huge shock, BUT theirs did not take them down this quickly. Which there could be some "mini TIA's" happening, mini strokes, and we would really not know that for the most part. 

Anyway, rather than drag this out, I know some of you have become "friends" on Facebook with me, and I am of course a friend on our Class of 78 Facebook page, so I also enjoy keeping up with everyone plus remembering "Ennis" and things we had and did as kids here, that are now just memories. Anyone, that may know of someone who would have known Dad and Mom, or myself, as I said I felt this maybe this best way to "inform" the few people we know and most of our relatives have already passed away.I am in Ennis and have been back almost 11 years from Seattle. I know a few did not even realize that. I will of course have something posted on the Keever's website once we reach that place, etc. But, mainly I wanted to get the word out, because this happened so quickly, and we don't have much family etc left, so I felt this would help to get the word out to those who wanted to know..... Pam Ravishing Rhiannon Steele

 

 

The last pic of the 3 of us in 2004, before my Dad passed away...

 

UPDATES THANK YOU'S AND EXPLANATION AS TO WHAT IS HAPPENING IN THIS NECK OF THE WOODS...

Congrats to My AWESOME GRAND DAUGHTER!!!!!! Heather I am so INCREDIBLY PROUD OF YOU :):) As you move forward in your life may nothing stand in your way, of you following ALL of your Hopes and Dreams! You are truly a Treasure and I could not ask for a better Granddaughter, and those two wonderful brothers of yours ;) Have fun, be safe, and live your life as if you are on top of the mountain! Nana Pam

 

 

Just a quick "Hello" and thanks all. Today is such a mixed day mentally, physically and emotionally.. I SO wanted to be at my GRANDDAUGTHER'S GRADUATION TONIGHT NEAR CORPUS, but alas with Mom as she is, and the WEATHER making life hellacious for everyone just about, I had to postpone my trip. Then I hate to whine, but MY BACK, LEGS, BUTT AND HIPS ARE ON FIRE!!!! after I got Mom in from the hospital night before last... dumb move on my part, but stubborn I guess shows me I should ask for help... at the moment I did not have one clue who to ask... but she is resting well. The aide came and got her all cleaned up, and I gave her all of her "comfort" medications, got things done there, and I just had to come to "home" for a bit, for the puppies, for me, and I need to get off my feet at least for a while.... love to all... and I am totally more than exhausted... so if I don't post, or accidentally don't answer the phone etc... I am just totally out of any "brain wave" at the moment.... 

Before it slips my mind, A HUGE CONRATS!!! to my incredible granddaughter today!!!! HEATHER YOU ARE SUCH A WONDERFUL YOUNG WOMAN, AND AS YOU STEP OUT INTO THE WORLD OF COLLEGE AND BEYOND, MAY YOU FIND ALL OF YOUR DREAMS COMING TRUE... I SO WISHED I WAS ABLE TO COME, BUT OF COURSE BETWEEN GRANNY STEELE, AND NOW THE WEATHER SO HORRIBLE, I HAVE TO POSTPONE, BUT MY HEART AND SOUL WILL BE WITH YOU THIS EVENING!!!! Love to you... and love to your brothers, Logan, and James... and also to your Mom, Amanda Batson- Matheny and Dad Jimbo! 

Update on Mom the Alzheimer's, getting home from the hospital and of course hurting my back again, and so forth....

You are all such a blessing, and know you are so loved and appreciated... Mom and I had "hell" getting into the house last night. They did not officially discharge her till like 6PM! And I had to get her into the house by myself, so with her having having both back and front, I chose the back, with two lower steps, and using her walker, we very SLOWLY and with a few "choice" words, LOL, made it into the house, and finally to her bed. Hospice DID come by last night around 7PM, I was so shocked, I did not expect a nurse by, plus they had a courier bring some stronger pain medication for her, and now all of her medications will come via courier.... so that will be easier... of course now Hospice has taken over for the doctors etc as far as the dementia, and anything "to do" with that diagnosis, etc for now.... so I am hoping it will "settle" down a little... I really did a huge NO NO though - I injured my LOWER back, which already needs surgery, between all of the walking yesterday back and forth, our hospital is laid out so stupid, and you have to walk what seems like a mile just to get to patient's rooms, but then getting Mom in the house, I did a real number on my lower back and my neck.... I got her settled in and came home very early this morning to do some stuff done here, that I have to do and then I will head back over there, because her Social Worker, Aid, and so on will be coming sometimes after 8AM I gather... so it will be another day of hell I think, just being up on my feet, and getting stuff in order and so on... but now the Ensure, pads, Depends, and any and all "medical stuff" she needs, they will automatically bring us. and I no longer have to be picking those things up, including I gather most of her "meds" ... not sure if it is all of them yet, but ones that go along with the hospice diagnosis they will get and have brought to me... which is some help... then they have a list of people I can have either come "sit" with Mom in the week, night, day, etc for a few hours, some volunteer, some I will have to pay, but I can still go with ""Home Instead" which is a "sitter service" BUT they will have someone there, and I don't have to worry over if I get sick, or need to be away, and someone HAS to be with Mom, even though it means paying for them, they are bonded and so forth, I've met with one of the main case workers already.... and it is MUCH less although not cheap, than putting her in a nursing home, which means about at the lowest 3,000.00 a MONTH for room and board.... so hopefully we can keep her at home, where she REALLY wants to be, and hydrated, and well enough to avoid the hospital again... I can't say how much I appreciate all of your thoughts and prayers... and I need to get busy getting things done here, etc... but I will post when I can... Love to all of your guys and gals, Rhia Steele "All things Autoimmune"

CNN Stigmatizses Chronic Pain Patients in National Pain Report by Paul Gileno

FOR ALL of us that are Chronic Pain Patients, Caretakers, family members of those who suffer from so many different types of Chronic Pain, many of us daily, and without our medications, along with other ways we "fight" against this epidemic, seeing that the CDC and the government is NOT on our side is frightening and down right wrong!

Those that do not understand chronic pain, from so many different types of illnesses, have no clue what happens to our "daily quality" of life. We would not be able to function normally, from taking care of our families, children, working, doing our shopping, going out to eat on a Friday evening, or even sitting with the family at home enjoying a movie. Chronic Pain without medications and treatments put each of us in a place of "NO life"... we would be sofa or bed ridden, we would not be able to cook, clean, do our yard work, shop, take our children to school or participate in the many, many activities that people that do not know what this type of nagging, gnawing, type of horrendous pain is like.

Many of us understand "acute" pain, from a broken bone, broken rib, from surgery, from an accident, which after a few days or week or so, that pain is gone once that heals. But, those of us with Diabetic Neuropathy, severe spinal pain and sciatic nerve pain, pain from the many Autoimmune Illnesses such as RA, Lupus, Sjogren's, Autoimmune arthritic types of pain, osteoarthritis, neck pain, pain from so many different types of problems that does NOT go away, that it stays with us throughout the rest of our lives... THAT IS THE SOMETIMES INTRACTABLE pain I am speaking of.

It always floors me when someone says, "You don't look ill?" Well, I, like most, do not like to go out in public looking like "death warmed over" as the saying goes. We "try" to put on our "best face"... to try and move through the pain, so we can appear to be "normal, even though our lives, our physical, mental and emotional states are far from normal. There is cancer pain, which in all ways is chronic, when it becomes "incurable". There are problems with bladders that can cause horrid pain, and it also an autoimmune illness. Up until I was "diagnosed" formally with RA, Lupus, Sjogren's, Raynaud's, and so forth, I had Migraines, and those were enough to cause me to have to after 25 or more years fighting them, had to quit working. They were so often and so severe, that I missed way too much work due to those. Then came my joints "falling apart" before I was even 35 years old... "arthritis" and people say how can someone so "young" have that had of arthritis that "eats away" at the joints. Well, we now know that infants can have RA, Juvenile RA, and some of them as young as 9 months old! So imagine, an infant so young, and the parents realizing that this hell of a disease shall effect their child or children for the rest of their lives.

I have always said, for anyone especially those in Congress, in the CDC, and so forth, that would like to "walk a week or two" in my or many others shoes with these illnesses would be screaming out for anything to relieve the pain!

So, the article below is just one example of how we still do not have ENOUGH EDUCATION IN OUR GOVERNMENT, in our NATION and around the World about ALL of these diseases that bring on severe, chronic, daily pain!







http://nationalpainreport.com/opinion-cnn-stigmatizes-pain-patients-8830432.html