Not totally "getting" Life & where it leads, where you follow, who is put in your life, who "walks out", & trying to Cope....

I didn't post this on my Facebook page... and I probably should.... because the way things are in my life now, Honestly, I do NOT give a damned who thinks what.... I lived MOST of my Life "stressed" over "who said what", and "what someone else thought" and the entire thing is ridiculous.... I honestly never cared if those that were "jealous" were... I never felt I had anything to be jealous over... I worked, tried to raise my two kids, had a "modest" home in a small town, and there was not a thing for anyone to ever think I had that was worth being hateful, spiteful, and "green with envy" over.... I had my "Dad's" personality, and I never met a stranger.... I was nice to everyone, did not matter, male or female, yet out of every "boss" I had that were women, they all just could not stand my "way" around people. It was ridiculous, because each and every one of them, had more than I did, one was married to a lawyer, and had a job well over my head, ah but after "firing me" a 6 years employee, that was told my the ER doctor to stay home, a few months later she lost her job... and that happened several times.... their own "greed", "envy" and so much of their "life" spent making me and everyone miserable, yet they got theirs also.... and I never had to do a thing... just go about my own business, and allow what was to happen... happen...

But, I "lost" a dear friend... that I talked about in my last post... I had not seen him in years, and as I have had time over the weekend to think about it, I am still saddened and at a loss .... why him? Why did it take me so long to find out? Why did someone not tell me? There were not a great deal of "people" that knew about him and I... we kept it that way on purpose... we never "hid" our friendship, and I often visited him where his family business was, which was a restaurant in a nearby town, and I lived not far from there back then... So, it was never a completely hidden relationship, but we just preferred the times we spent together listening to our favorite music, and bands, and having a beer, and talking, laughing, without any distractions, without any "gossip", oh but I am sure there was plenty of gossip, I just cared NOT to listen at the time... "we" knew what we had, and that was good enough for us.... there was a respect, we treasured those times, and tried to see one another when we could, but he worked a lot, or he had other people, friends, family, and at the time... neither of us thought about "more"... what we had together, was "more".... I've had time to remember those times that I would "pop" in on a weekend, maybe a Saturday, or drive by and find his truck at home, so I stopped, or even time he was not home, but I was always "welcome" to be there, even if I just needed somewhere to get away, from all of the "crap" of my life back then...

I was and still am "angry" at myself, for not trying to contact him... I should have, I am not sure he even knew I was back in TX, and had been for a long time, just down the road a bit... but I had "my life" and lots of it during the past 13 or so years, have not been the most pleasant, plus, I guess I was "busy" with my own issues and trying to find once again a purpose, other than being SICK! With all of the "illnesses", the autoimmune problems, the surgeries, the scars from knee replacements, a shoulder replacement, finally my "pretty teeth", that were and are not "my teeth" yet they are pretty... just not the way I thought it would be...

So, after much thinking about it all, I am posting this Obituary, and what bit I could find about him... I think it is the very least I can do, for someone who was and had remained near and dear to my heart... and this morning as I listened to Brooks and Dunn, and recalled how much we loved all of their music, and how many nights, we spent dancing to those right there in his living room, I feel I must post what I know  - now.... and I hope to find out more, I would like to know what happened to him....

Ronnie Blackwell
April 19, 1957 - June 10, 2011
Former Corsicana resident, Ronnie Blackwell, 54, left this world June 10, 2011 to be with the Lord and Savior.

He was born April 19, 1957, in Corsicana to William and Corrine Blackwell.

Ronnie graduated Corsicana High School and attended Navarro College. He also served as a member of the Navarro County Peace Officers Association and Society for the Prevention of Cruelty to Animals Organization. Literally growing up with the restaurant concept, Ronnie devoted many years of his life to continue the legacy of the family-owned business developed by his mother and father. Bill’s Fried Chicken and Cafeteria always remained a large part of his life.

Along with his interests in animal welfare and golfing, Ronnie was a Texas Longhorn fanatic. He devoted much of his time and energy by showing loyalty to support the “Burnt Orange Nation” football program.

He is preceded in death by his father, William “Bill” Blackwell.

Mr. Blackwell is survived by his mother, Corrine Blackwell; two sisters, Carol McCrory and Barbara Cantrell; two brothers, Ricky and Steve Blackwell; in addition to many nephews, nieces, great-nephews and nieces.

A memorial service will be held at 2 p.m. Saturday, July 16, 2011, at Griffin-Roughton Funeral Home Chapel with Bro. Floyd Petersen officiating.

Should friends desire, contributions may be sent to the SPCA of Texas.

Arrangements by Griffin-Roughton Funeral Home, Corsicana.

Life Ongoing and Fleeting, Memories of a Time that seems like a blink of an Eye ago, dealing with AI's, Lupus, RA, Friends or lack of them, & All we are thrown daily to contend with....

WOW! I bet a few of you are saying! It has been a long while since I posted so early. I used to be up by 5AM, and that all changed several months back. I began to stay up much later than I did, thus I find myself not getting up before the dawn appears. I am honestly not looking forward to cold weather. It at one time was almost my favorite time of year, especially around the 2-3 weeks of February. Not due to my birthday BUT that is when we always planned and went on our annual snow skiing trip... it happened to fall right around my birthday, and WOW, I planned for that all year long... before we even finished getting home good from one trip, I was already setting up a "Christmas fund" at the bank where I used to work, and that money was always for the trip & Christmas also. I watched the weather all the way up to that last moment, just thrilled to be going back to Wolf Creek Pass, and Pagosa Springs CO... and also Santa Fe NM... Some of my most incredible memories are wrapped around that time in my life and I would give anything to be able to go again... I am not so sure about the skiing anymore even though I would love to try once more... but that was long before knee replacements shoulder replacements, cervical neck surgery and autoimmune illnesses.... so it would also mean in order to snow ski, back to walking that 5 miles a day I did for the entire year before we went.... and even at that, it still wore me out to ski especially if we skied 4 days rather than 3... I did have several video's of us, we took a camera and taped us a couple of years, and right now I am not even sure where those are... since then with all of the moving etc... they have been placed gosh knows where, but I still can replay each moment in my mind... my favorite part which was like a half open pipe, the sides way high up so when I skied, I went up one side, down into the "pipe" and back up the other... everyone knew if I was difficult to find that was where I would be LOL....then there was the time, and I had a pair of NEON GREEN snow pants/snow suit - and it was a pretty sunny day and I had been headed through some trees, and as I made one last little jump, one of my skies decided to stay behind, so here I was sliding through the trees on my stomach flat and just laughing... some guy and his wife were behind me and saw it, and he yelled at me "Looks good from behind here"! OMG - His wife hit him.... LOL! another one of those "moments" that get etched in our minds, and something that I will never forget... like the outdoor hot tub and it snowing on you when your were in it, and the indoor pool we ran and got in as soon as we got out of the hot tub... and the place we ate breakfast each morning, where the Elk came came a hill on the other side of the road and we watched them each morning, or the Mexican Food place we ate at when we got back from skiing - and they would fix me a "hot toddy" because I would always come in with a sore throat... LOL!!!! and how Pagosa Spings (which was like "Hot Springs Arkansas) due to the hot springs there the entire town smelled like rotten eggs.... LOL... you just got used to it after a day or so... and it did not matter because.... I WAS SNOW SKIING! I could sit here and almost write a novelette about my experiences going skiing for many years there during my 30's I believe.... and why that came to mind this morning, I am not sure, maybe the Winter/Fall chill in the air, or the fact, that rather than think about ALL I need to get done, I would much rather think of just how incredible those years were for myself, friends and my kids even went a couple of times... that was when Amanda my daughter was probably about 8 or so and the first time I sent her for "lessons"... she came walking down the hill with one ski in her hand... and I thought she was hurt... no, but the tree she ran into was bruised and her ski broken! LOL! She decided she did not need lessons, so off she went on the "bunny slope" herself, ran into a tree and busted the boot off of her ski first rattle out of the box! Thank goodness they were rented and insured so we got a new one right away! :) Those years have come and gone, but the memories made will remain brightly lit in my mind forever.... (or I hope they will).... Lately, life has been nothing more than one big ball of knotted, tied up, strung out, a mess of a ball of thread... it seems everywhere I turn there is something I need to do, somewhere I need to be, or an errand to run, medication to pick up, and now I have to all a plumber today... I thought I had remedied my problem but I have not, thus now I plumber has to be called and I don't look forward to that... it does not take long for a bill to get large when you have to call in a professional... in all of my undertakings, as FINALLY I FIXED A LAMP that my Mom had and it quit working. It is a pretty lamp, nothing wrong but I knew the "socket" had gone bad in it... well I bought the kit, with even a new cord in it, just so I would make sure ALL was new... it took me about 5 days in all to figure it out, and even though it was not difficult, in my head I had a portion that I was seeing to be more difficult than it was... so on Friday, it dawned on me what I was doing wrong, and sure enough, I got it all together and working! So, my DIY skills can work still, sometimes it just takes longer than it used to... same way with anything now days... I find myself yesterday in need of needing to sweep well (Swiffer), then "Wet Swiffer" my hardwood floors and mop my kitchen... and then I needed to vacuum, dust, etc... BUT, it took me so long to just get the hardwood floors done, in between all of the other "little" things I had to do, that by the time I was ready to vacuum, it was already after 4PM, I had told Mom I would drop by an lite her heater again, so I had to stop, decide to vacuum "tomorrow" so today, and then I wondered why it took me so long to do those floors??? I used to have been able to clean the bathroom, do all of that vacuuming, dusting, mopping the hardwood flooring, and so on, and still have plenty of time... but not anymore... for one, my energy is not what it used to be... I am much slower about things now... I had not been to church in 2 Sundays to do being sick, so I wanted to make sure I went yesterday. So, even though I knew I would come home to "chores" I got dressed and went to church first...yet by the time I ran home, changed clothes, went and picked up a couple of things from 2 stores, got home, and done that cleaning, it was already 4PM! By the time I got over to Mom's, lit her heater, visited for a bit, and got home it was already almost 5:30 and I had no clue what I wanted to have for dinner... and Bub's was looking at me like, "Hey, you have to feed us!" LOL!!! I almost settled for PBJ Sandwich, but I had some leftovers I managed to warm up and add a bit to, so he and I had a good dinner.... I guess he did he was not really even wanting dessert later in the evening when we watched a movie! Now, once again it is Monday - another ONE OF THOSE! I am sure that sounds silly for someone who is disabled, and does not have to "leave home" for work any more... but you know, I still have as much if NOT MORE to do now, and a lot less energy to deal with it all... so "Monday" is also one of those "Mondays" for myself also... it is trash day, and the beginning of usually errands, doctors, meds, running, phone calls and "stuff" to take care of... and that is exactly right... I have a list on a smaller yellow pad BUT it is 2 PAGES long! So, just because I am no longer "employed" outside of the house, I still have a ton of stuff to take care of... I need to have some of my meds refilled, and call to schedule an appt for my Mom at one of her doctors, and take Bub's to the Vet in the next couple of days, he needs his rabies shot and his back toenails cut which I DREAD! Neither of my dogs liked their feet touched... and he actually "nipped" at the Vet's assistant last time I had him in, so that means I have to "muzzle" him and I hate that!!! Thus of course his nails are way too long and no matter how I try he will not let me cut them... I have tried every thing in my power to get him to let me cut his nails, but him and Tazzy hated their feet messed with... ONE THING I WILL do differently with a new pup.... CUT THEIR NAILS RIGHT OFF MYSELF... and avoid having to take them in, have to muzzle one, like Bub's, and it saves a great deal of time and heart ache for me, because I just hate having to put that thing on him....and I even tried at home at one time to muzzle him, but he is so strong with his front paws, that he can pull it off, if I don't have anyone to help hold his feet down while I do muzzle him... so to the Vet we go, and I know she will faint, because most women would envy how long my dogs nails got and get... it is just nuts... but since they are in the house, they don't wear them down like outside dogs do....

I've been in such a tangled mess with my life in the past several months... I feel as if I am NEVER "caught up" - I always feel like I am 5 steps behind what I need to be doing, I am so slow at everything... I even had my hair cut all off short, so I don't have to take time with it because I feel as if I can spend that time doing something else other than messing with my hair...but the sad thing is I bought color for it gosh, 3 or 4 weeks ago I guess, and I STILL HAVE NOT found the time to color it! Something else always seems to take priority or by the time I may find a moment to do it, I am too tired to fool with it, so here it sits on my desk, as a reminder of one of the MANY things that need to be done....

As I stopped a moment to make out a Birthday Card for My Granddaughter, Heather, who will be 18 on the 30th of this month, again memories flood my heart, she met me when she was only 2 years old, and "Nana Pam" now is what her and both of her brothers call me. I've been able to "watch" them grow up through here, Facebook, - my daughter has been so great about posting all of their vacations, school functions, prom, homecoming, football season, Heather being a cheerleader, in volleyball, their vacations, the boys and all of the excursions they go on with their Dad and their Mom, my daughter Amanda, and again, how time has flown by so quickly just makes me wonder how life can go by within the beat of a heart, within a breaths space.. it seems I just met her - a tiny little thing, and here she is all grown up about to be 18 and off to college! My how life can truly rush by... at times I am sad because I am far enough away that I have not been there physically to witness all of their triumphs, but as I said my daughter blesses me with so many photo's of all of their special times that I feel like a piece of me is always there - watching as they grow into young guys and soon Heather a young woman off to college to follow her own dreams.

I often "feel" for our kids now days. This world has truly changed so much, and in many ways, NOT GOOD! There is so much more rivalry, rather than chivalry out there now... where there used to be goodness and gratefulness, has been moved to being greedy and just down right hateful and mean.... people are "bitter" about so many things, and of course in some ways, they have the right to be bitter. When you stop a moment, and think of all the horror daily not just in other countries but right here on our own soil, in our schools, colleges, Malls, everywhere there are "people" there seems to be a "person" which is is difficult to call someone a "person" when they want to do harm to other innocent people... but it is all around us... NONE of us "immune" from that fact.

Yet, there are still "good people" those who are kind and generous. They do for others, and not because they have to, but because they "want to".... I have a dear friend who is really going through a very tough time .... she is fighting the big "C" word, after having it back a first time while we were basically still in High School - and then here it is 30 plus years later, and again she is battling it... trying to work, never has a bad thing to say about anyone else, an is always so very grateful for those around her that do all they can to help, out of the kindness of their hearts, not because they "have to", but because they "want to"....

And I partially because most of my family is gone, My Dad and all of his siblings, parents and so forth passed away, and even some of his cousins and so on also gone. I was basically an only child, and have a "half brother" but he was at least 15 years plus older than me, went into the Air Force and spent 20 years much of it overseas in England. He retired from the service years ago and then they settled in North Richland Hills in the Dallas area and he was working for one of the big helicopter flight simulator places I believe. So, my Mom's parents have both passed away, she has lost both siblings, an older brother and his wife, and lately her younger sister to cancer... so when it comes to "family" especially close family, I really only have Mom and my two kids and of course my daughter's family. Even at that they are hours and hours away, and my son, also at least an hour or so away, with a job of his own, and life to also deal with.

So, last week when it came time to try and "adopt" a pup I did not realize the entire realm of red tape involved. It has been years since the last time I actually adopted a cat or dog... my last two, Tazz was a Christmas present and we bought her in Seattle, and Bub's I also bought him when he was just a puppy.... so when I get this email wanted ALL of this stuff and THREE references - asking ALL about my home, yard, how I was with my past animals etc... I was like I don't have that many people that are here close enough to give me 3 of them... but Jim was gracious enough to fill one out and my Mom helped me out, and hopefully with those, and everything I've told them, along with Vet records from my current one, whom is just a sweetheart and I am so happy she is back in town also... we went to school together... and then my other Vet that took care of them for years before Venetia Shafer at BlueBonnet Vet Clinic came back... I am hoping that is enough .... I've been racking my brain to think of someone else... of course my daughter could help out or my son, but they are so busy, taking to time fill out a long form for them is difficult... with kids, jobs, home and so on, I can't believe they keep up with everything as it is....

I guess that is the one thing I hope "joining the Methodist Church" would help me with... now that it is just myself and Bub's... I have Mom, but really no one that is a "close friend"... and a couple of people "close to me" but not like we do things together etc... so I was hoping by getting involved back in Church, and hoping to find some other things to participate in, I would find some "friends"... and we all know with the autoimmune illnesses, the Lupus, RA and so forth... my life "daily schedule" varies from one moment to the next... depending on how I feel, or how Mom is doing...

I also realized that if it were not for my Mom, I have no one to "assist" me with anything, say this plumbing issue... or anything like that... I don't "know" enough people well enough in town, even though I have been here for all my life for the most part, I guess due to my "life when married" I kept myself more at home, almost locked away, busy with those things, I did not get out in the community to meet others... and here I am 55 years old... and unlike a couple of my friends, or like my neighbor, they have "friends" that are helping them building a two car HUGE GARAGE that is as big as my home! I "Lack" that type of support system... I am "new" to the church, been going now for about 3 months, but sick some of that time... I have not gotten out and about to meetings, or even to the Saturday Farmer's Market and so forth, so I must find the "funds" to pay for my plumber, or have work that is so in need on my home, or any and everything that comes up, there is not anyone I can have that could help out... and you know, that frightens me honestly... of course I have my Mom... and my daughter and son, but they are as I said hours away, and have their own jobs, lives, and so on... so I am upset with myself... that I have allowed myself to stay "almost too alone" to have any kind of support system... my neighbors have "helped" some, but I have been quite honestly upset with one in particular... he used to always be here asking if we needed anything... when Jim was here, he constantly was mowing the lawn, and I usually paid him, even when he said he did not want it... but I knew they needed the money at that time... and my other neighbors have a very ill Mom they take care of and another one is up in age, and she needs help herself... so it gets to this spot in life, that you begin to think, what would I do if I needed this, that or the other... I can guarantee my Social Security Check pays the bills barely, and that is all... in fact I am very upset with my car insurance, it seems every time they bill me, that bill is higher, even though my car is older... and now I must spend Lord knows how much time trying to find a "new" and hopefully better Medicare Advantage Plan... the one I chose for this year has sucked more than I can say, and they are someone I would NEVER ever recommend to anyone! I am extremely disappointed in AARP for even "sponsoring them" - they have done some really horrible things this year to their patients, and I am just mad as hell honestly, because now I must spend days trying to find another plan that will cover ALL of my doctors, my medications and that is a hard thing to do now days... our doctors are all shy of even Medicare and a supplement these days... they DO NOT get paid for months and sometimes a year or more, thus they are leery.... Well, I need to get busy on other stuff as you can see, but I wanted to take time to first tell those who do help THANK YOU! Whether a kind word, or support of my advocacy etc.... I appreciate all of you.... and to let you know there are many things right now in my own life that are frightening.... I am going through a great deal of emotional distress... and "losing" a relationship after 13 years and then losing Tazzy after 3 years, have really put me in a place of even more distress.... there are other things playing into this but, I shall stay quiet for now about those.... but to all, remember the great memories and hold them close... remember time is fleeting, and before you know it, you are in your mid 50's and wonder what the heck you really have done in this life.... and to hold on to whom and what is dear to you.... Rhia

Tips on How to Share your "diagnosis with family, friends, the public and so forth - These tips may help in any type of chronic illness or pain issue, not just autoimmune

www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Living-Well-with-Rheumatic-Disease/Sharing-Your-Diagnosis-with-Others

The above link comes from the Rheumatology site and it gives you assistance on whom, how to, what to, say or maybe not say about any illnesses such as RA, Lupus and other autoimmune issues, but many of these same tips, when you have an "invisible illness" especially could help you also.


I know for many, they feel an isolation, a coldness from others, when they explain being "chronically" ill. Some want to try and put it off to you just being "lazy", or to use as an excuse to do or not do something. Others thing you are just faking it, or that it is a way to gain attention... all of which is total bull, but I can attest that even DOCTORS can give you that feeling. In fact just last week, after being ill for months with other issues, and feeling as if I had a Lupus Flare coming on, that ONE DAY after an entire year of not getting to see him, but deal with his PA, and guess what? That is the one damned day, I feel "better"... and I had emailed me on several occasions about how lousy I felt and what all was going on, and yet then he walks in expecting me to look horrible and I look fairly well..... I knew he wondered if a part of me, was just complaining to complain. So, then I spent two entire days, plus even the weekend feeling lousy, a headache, a stiff neck, the mylar rash my throat feeling swollen and raw..and today Mom and I went into see our PCP.. well I did not look all that well this morning, BUT I also once again did not look as "sickly" as I had felt and been over those past 4 days... I did tell him that my Rheumy gave me the flu shot.... and i told him usually I kind of feel lousy or maybe achy a bit, but never have I ran a fever, high enough that again I was almost hallucinating... every joint hurt, my head and neck hurt so badly... and so I thought he would give me a corticosteroid injection to slow down or help this Lupus flare go away... well he said the "new" flu shot this year contains FOUR rather than 3 strains of flu and thus my body may have reacted quite differently due to being autoimmune & if he gave me the injection and the prednisone, then my flu vaccine would basically be "useless" because my body would fight it off if I took that now...

So, I have to wait at least another week, and if I still feel as if I may have a flare THEN I can go in for the injection and medication.... so now I have to I guess just tough it out, which all too often is easier said than done.....

More on the "Abscess, Cellulitis, autoimmune complications, does our water contain something making us sick, Biologicals, stomach upsets, RA, Lupus and when do it EVER END???!

Thanks Denise Tekell and Yes Nancy Hershelman Gipson this "thing" that began as a lump on my thigh has turned into yet another one of my difficult situations, that sometimes even the doctors are not sure the "why", when or how of it all. What makes it worse is that I have not really said much to the doctors that is, about the "lump" on the other thigh... I cannot fathom how I would have "two" abscesses, in almost the same location, yet one on each thigh... unless as I had suspected, it has something to do with my biologic Orencia injections. I take them at just about where these lumps originated. So, some where I have this gut feeling, those needles from that batch of Orencia, were contaminated... I "thought" originally that this one that now has turned into an abscess... I had gotten a very tiny sliver of wood in it. I had a very small kind of gray looking spot come up, that kind of appeared to be like what you see after something such as a splinter gets in to your skin... it seemed to be a tiny bit of trying to get infected... I kept working with it, keeping it clean, and finally I thought got out a very, very tiny almost little sticker out of it. At that time, there was just a very little bit of stuff that was a bit yellow that also came out with it. But, I cleaned it up put Neosporin on it, covered it with a band aid, and in a couple of days, it seemed to close over and be well. It was about 7 days or so before this other "lump" began to form, and it was actually a bit above where that sticker was... not really right on that area. I did not give it much mind, until I noticed not only did the lump get "sore" it was getting larger. By the time I finally decided it needed to be seen about... it was just a lump, no redness or anything visible on the outside of the skin, just the lump that was then about the size of a silver dollar or maybe a bit larger. I went into my PCP, he took one look at it, and knowing my health issues, said it was cellulitis, and he immediately started me on TWO different antibiotics... I found out one for staph and one for strep... which would be the way to do it, especially with my immune system so compromised. ell, I took those for 7 days, and even though it got smaller, it left almost harder, so I called him, and he put me on a 2nd round of the same antibiotics... well 7 days later, the lump did not shrink anymore, plus it began to be sore, to the touch, so I went in that time, he said, of course my immune system still was not able to fight it off enough, so he did one more rounds of the same antibiotics, and said if there was no improvement, he wanted a surgeon to remove that lump and have it tested to see exactly what we were dealing with. Well, I went through hell and back trying to find a surgeon fairly close that took my insurance. I finally did, but he could not see me for like 10 days, and by now the lump began to show OUTER problems, with redness on it, even more sore, and seemed to be almost "swollen" around the lump.. So, that was a week ago last Friday... again I called me PCP told him that now it was showing outward signs of infection, and told him the surgeon would not be able to see him for another week, and I was very concerned... so he put me on one more round of antibiotics until last Friday, when I went to the surgeon. He came in took one look at it, and said it was an "abscess" that needed to be "cut open" to drain, and sure enough, after I almost fainted from the pain of the damned Lidocaine injections to just deaden it, which they hurt and stung like HELL!! Then even with the deadening, I could feel it when he was putting Q-tips inside of that opening to clean out all he could get out... he then proceeded to tell me he was going to "pack" it, and I needed to remove the packing the next day, and at least twice daily remove the bandages, clean it with Q-tips dipped in peroxide and he said I could just put a large band aid on it... on heck no... it is still so sore, I don't dare NOT cover it was gauze pads and medical paper tape... I can have pain with it, just walking, much less if I were to accidentally hit it etc... Of course you saw the photo's I took those yesterday.... and today it almost looks "worse" to be than better... but I really am not sure, so I've been doing exactly as he told me... and it still has a huge hole in there, that is as wide as the top portion of my little finger, and is at least that deep... and the length is almost1 1/2 inches or more... enough that I can get 3 Q-tips or 4 in it at once, and I still almost feel as if I am hitting "bone" at the bottom... I see him Wednesday... to hopefully find out "what" was in it, and maybe why... but also figure out if this other one is the same thing, or something entirely different... Needless to say, between that stupid thing, my Tazz, my Pug has been sick to her stomach, I've had to cut her down to eating a bit of white rice, a bit of yogurt, and drink....and I got sick before going to church yesterday morning and have no cue why... I "felt" fine, I thought, got dressed, did my makeup, had my hair looking okay, and just about 10 minutes before I walked out of the house, it was like my stomach "flipped" 2 or 3 times... and I was running for the bathroom, sick to my stomach, almost got my dress messed up and wound up taking meds for my stomach and staying at home yesterday... in fact I needed to run out quickly, grab some more gauze pads for my leg, and get a "coke" which settles my stomach, and I thought again I was fine, but about the time I was pulling onto my street to get to my house, I almost did not make it.... I ran in and again was sick to my stomach... just insane ... and my Mom has been having the same issues off and on now for weeks too... I've even changed over to bottled purified water for now, thinking it is a bacteria in the water... it can happen this time of year, and in fact there must be something going on with our water... because there was an article in our local paper Saturday, about they were going to do some "testing" and it may have a "bleach type of smell" and for those who put it into medical devices, may want to use bottled water for a few days, like dialysis machines and so forth.... So, now my RA etc is acting up, due to fearing to even attempt to take my Biologic - plus my Rheumy is trying to get me switched over to Xeljanz, so I would not be able to take it and the Orencia... it is just a living hellish nightmare, all ofit....

In Remembrance, Reflection, Pride, and & Celebration. May YOUR July 4th Holiday be all you want it to be...

Have a Happy, Safe, and Wonderful July 4th Holiday Weekend!

 

I want to wish everyone a very SAFE, HAPPY, and reflective July 4th Holiday weekend! As I watched what the news had to say yesterday evening, it was pure shame I felt (even though I am not one of ""them") that our Grand Nation, has have to endure such horrific hate crimes, terrorist acts, and again "credible" threats enough to warrant each and every "celebration" especially in our huge cities, like Washington DC, New York, LA, and more to either have so many "patrols" out, or some have even cancelled their events due to the fact they feel it is NOT safe enough to even have a beautiful celebration of our Country, the USA! That also makes me mad, sad, and also even a bit fearful. Our small town has a "celebration" planned for tomorrow. We have now had a "Farmer's Market" that opens every Saturday to local growers, who come and sell their fruits, fresh veggies, and so forth. So, our town also is including some out of town vendors, even a small concert, and then a fireworks extravaganza* in the evening,, as well as one out of the Texas Motorplex, that they have been putting on for years for the holiday. Yet, even here, just because we are a "small town"... you NEVER KNOW... who could be a "lone wolf".... we have had our share of close calls in our country and the surrounding ones, and we don't live but about 35 miles from Dallas. So, we want to put aside our "fear" and think, "Oh, this would never happen here, not in our small community"... alas, sad but true, it only takes ONE person to create a horrific scene even in a small town.

So as we ready ourselves for cookouts, family gatherings, going to other celebrations, the lake, camping, and all of the many activities going on throughout our nation, be "viligant", watchful, and don't be afraid to "report" something you feel is "not right".... those types of "mindfulness" is what keeps us safe, happy, and being able to celebrate with family and friends...

I bid you ALL A Wonderful 4th of July Holiday Weekend... whether traveling, or at home cooking, wherever you are, be safe, be happy, we do still have much to celebrate and in so many ways... and Enjoy your Holiday! Hugs to All, Rhia Steele

 

When Life changes upon a "dime"... how do you cope? "It is not easy to be... me"...

Further information on our friend and client in Seattle. He may have that portion of his skull that they removed off for even a year. He will have to wear a helmet to protect his brain during that time (which I had also read). They will "freeze" that part of his skull in a special way and then can put it back later after things are settled. They say that even though he is responding and seems to know everyone and so forth, he seems to have no movement in his left side of the body at all right now. What really makes this difficult on Jim, my husband, is that after the accident a year ago, he is also basically left with his left side also the one with the most damage. Of course Jim's is from the nerve damage of the spine being basically "broken" from C-7 through T-7. But he continues to "regain" more use all the time in little ways. The nerves can somewhat regenerate, even though just a few years back, they thought they could not. Researchers now know that some nerves can definitely "heal" themselves, it just sometimes takes months or even years for that to happen. Fortunately it seems that his "autonomic" nerve system is intact. Even though they have him on a vent, he is breathing over and above it on his own. So, it will be a moment by moment watch for him. We never really have gotten exactly what happened, but it appears the brain bleed was probably stroke related. So, only time will tell. I am sure the biggest concern now, is of course the swelling on the brain, and fluid, he is extremely "puffy", his face and all are so swollen that he cannot hardly open his eyes. But, also I am sure they are watching and treating him for another bleed of the brain, or a blood clot would be my guess they would be concerned about now... so please continue to say prayers for them. As I said he and his wife have been "clients" now for over 10 years. Yet, before that Jim and he were friends at least 7 or more years before that. They own an online retail store, and he also has a business set up on E-bay. So that makes this even much more difficult. They were kind of "a family" business and needed to ship out parts daily all over the world. So, his wife is probably just in a terrible state trying to keep up with business and feeling badly she can't be with him all the time also. AGain, much like Jim and I a year ago. I needed to be home taking care of things here, and there was so much to make sure was taken care of after the accident, and then split my time being with his in Dallas at the hospital also. It certainly was not a great time in our lives, and in all honesty, things will never be the same for us. It has really taken its toll on the both of us in so many ways... more than you can know... and more than what we even thought it would. As I had said we would have to find a "new normal"... well that new normal changes from moment to moment. Between my own health issues, and all I have to take care of daily, and then Jim's lack of being able to do so many things, and his disability also, we both are truly at times on overload... I find us sometimes going for days and not really saying much to one another. We seem to get to a place that we are lost in our own thoughts, and tend to keep them to ourselves. I know I feel as if I am walking on egg shells all the time, and I am sure he feels the same. There seems to be "drama" about something every day... and now here I face this very invasive discograph, later in the month, again I cannot drive myself from, and then what if I have to have back surgery?? That is just another issue we face, and how we will get through that? I probably may not be able to drive for a few weeks... and who will take care of the dogs, and feeding us, and doing all of the errands and so on... so you can see, and all of you that have been through or are going through similar issues can relate....


When I think of the song by "David Grey".... that is how I feel these days... "It's not easy to me... me"....

Holidays Upon Us - Feeling Lousy - But trying to "Put on a Happy Face"

Just about every one of us know this dilemma. We try our best to make the holidays a special time of year. Whether it be the upcoming Thanksgiving and Christmas Holidays, or the others during the year; none of us want to "ruin" our family and friends holiday season.

So, we often put on that "Happy Face", and try to hide behind the mask of pain, fatigue, stiffness, swelling, and all of the other horrid issues we put up with physically, mentally and emotionally during the year and especially during the holidays.

I am headed out for now to have my pain pump refilled, so I shall finish this later this evening. But, I do want to say I pray everyone will have a safe, Happy and a reprieve from illness for the holidays.....

Rhia

Have a Wonderful Holiday!  

 

 

SECOND PART!!!!!!!!

As promised I am "here", just a bit later than I thought I would be. It has already been one helluva week. Between 2 days of doctors appointments, getting ready for whatever kind of Thanksgiving we are having (not in a bad way, just seems thing keep getting changed around), the entire ordeal about Jim, the accident, all of the ongoing and going and going about doctors for him that either are just NOT accessible, OR they are total jerks and quacks. Talk about some "scheming". I found out quite a bit more on this whole thing of getting things taken care of with doctors that are NOT on the up and up. 

Speaking of... the up and up.... Something happened today while I was at my pain doctors office in Dallas having the pain pump refilled. Of course it is NO secret that I have been in an insurmountable over 5 to 7 days of unrelenting pain. I of course mentioned it to him, and thought he might take the "hint" to either up the pain med in my pump (which can be done) OR just allow me to take my "breakthrough" medication a bit closer together, at least until I am over this damned hump of pain. It is just insanity and it is driving me over the insanity brink for sure. I did get a huge shot of Solu-Medrol yesterday while I was at my PCP office for a recheck. After telling him and then I asked about going to the corticosteroid injection at the office, and then a 14 day step down dose of prednisone, he said yes, most certainly we can try... thus we did. I seemed to have been a bit better this morning. I was able to stand on my feet almost without wincing in pain. But, as the day wore on, between the drive to Dallas, not getting to really eat, then going through the entire refill crap, and of course driving home... Then a "hog for punishment"... I decide to go out after getting home, and do a bit of my "coupon/sales" shopping, which I knew was probably a mistake and really stupid honestly. It was already almost 4pm, I was exhausted in every way from mental, physical, emotional... you name it... but I did manage to make my way down to our local Dollar General and pick up a few things that were "crazy" on sale. By the time I got home, I was just totally wiped. I had to let CVS and Wal-Greens go until maybe tomorrow, and I may try for Family Dollar, but I am not so sure yet. 

I will NOT shop on Thanksgiving, sorry but I think that stinks to the high heavens, that anyone in retail makes employees work on a major holiday!!! If everyone does not get what they need by Wednesday, then they can just do without it for one day!!!! It irks me to the ends of the Earth that they open those stores on a holiday like this one. Anyway, of course "people" will go, and if they come, of course that is money in their pockets, so open they are.

And you can certainly forget me getting out on "Pitch Black Friday"... I am pretty "hair brained" at times, but being out at 2am in the morning to shop, is just not what I call "fun"... Now IF we were headed for WINSTAR, now that I WOULD GET UP FOR! :):):)

Plus in all honesty, I don't have a huge family to buy for anymore... and sometimes it has become easier as the kids have grown up, and like my daughter, has a family of her own, to just send them money, and let them get what they want, need, and like. I swore when I saw my parents do that, I would NEVER ... I always believed in getting a present for everyone... that is partly what made the holiday, Christmas. But, as I have aged, and the kids grow so quickly, it now makes sense as to why my parents, and their parents did it. 

I really should be writing some words of wisdom for those of you who are looking and searching for "answers" in how to "survive and thrive" during the holidays. I am speaking of course at the moment about those of us with chronic illnesses, and chronic pain... from the autoimmune diseases, to chronic pain, migraines, CFS, FM, and the entire gamut of these that cause us grief most every day of our lives. I think I have truly discovered why I love to make a trip to the casino every once in a while. It is because once I step into those doors, until I step out and get in the car to come home, "illness" flies out the door, and stays out until I leave. It is the people, the noise, the lights, and most of all, your mind or for me, my mind is "clear" for a while. I am NOT thinking about medications, doctors, tests, prescriptions, pharmacies, people that are just plain stupid, lazy and don't give a damned that don't need to be in the business of health care at all, if they DO NOT LIKE PEOPLE!!!  I hear it and see it constantly... they either just don't give a damned about us as patients, or they don't really want to be there, ... but I see it more and more from all walks of what the medical profession is supposed to be... greed, laziness, no training, not doing their jobs, and we do it for them... it just makes my blood boil, when I hear that "tone" on the phone. You know, that one on the other end who could care less about my needs as a patient and what THEY should BE doing and they DON'T!!!! 

Anyway, so to step into that huge building that has NOT ONE WINDOW in it... NO CLOCKS, and every kind of sound, feeling, sight, and emotion rolls into those slot machines while I am there... so it is not really the "gambling"... Lord knows I DO NOT have "gambling money"... but it is the get a way from it all. Even if it is just Sunday, and we don't stay the night, still it is a rest from the daily mess. I should "coin" that phrase, "It is a rest, from the daily mess." to put it lightly.

So, for me, honestly, I am in so much pain, even as I type this I am wondering why the hell I am!!! My wrists, fingers, elbows, shoulders and neck hurt so badly all I want to do is sit in the floor and cry, cry, cry, cry.... but then I would have a Migraine, thus that is not a help, maybe a release, but certainly not a cure.

I have "lots" of advise about how to "help" your holiday run smoother, but everyone has their own way to handle it. Some just say NO... some stay home, some go out to eat, or to a movie, or to the casino... for some it is being alone and for others it is being with family and/or friends. For some it is "giving" of oneself, and serving at a homeless center, or church to others not as fortunate as many of us. So, you have to "dig deeper" within yourself to figure out "how to survive the holidays". 

Lately, I will say for me, I have been extremely fortunate, and found some incredibly super bargains on a few outfits, a pair of shoes, some leg warmers I found today, and also racked up some savings on some new eye shadow, mascara, eye liner and I even bought some "false lashes".. but it has been years since I tried to put them on, so I have not braved it yet. So, for me, between reading some really great "beauty" tips, especially those that are truly inexpensive etc... and get a few clothes for a tiny bit of nothing... (I've probably spent about 50.00 on ALL of it)!!!! Between "mega-markdowns", super sales, cashing in on coupons, I got a pair of 80.00 shoes for like 10.00, bought about 7 or 8 tops for about 15.00 or so, makeup around 10.00 leg warmers 2.00!!, plus a few other odds and ends... but I have not spent hardly anything for all of it! So, that has kind of been a "new release" for me... finding ways to have "nice" stuff, without breaking the bank... the better the bargain, the happier I am honestly. So, when things are too much to bear, I open up an email from Total Beauty, or a couple of others I get newsletters from... and even do a great deal of DIY, skin, hands, feet, nail treatments... gosh sometimes we do not realize how many things we already have in our home that work great on skin, hair, nails and so on... so I look for those, and give them a try... if they suck... they suck... if not I am not out anything... 

Okay well, it is midnight, and it's been forever since I've stayed up late like this to write... I am hoping it will help me, and if we are lucky, maybe you might get a kick out of reading it....

Happy Thanksgiving, Rhia, Jim and the family

Some of Life's Little Disappointments - Especially When It Involves People, Promises and Illness

I've been on what some might call a "tear", "Rampage", "soap box", "griping session", or just plain bitchaaaching and griping over the past couple of weeks.

As this age, one would think by now, I would totally understand PEOPLE will let you down, disappoint you, make you feel less than, not as good as, or like you are some 3rd "rate romance", in some "motel rendezvous" - Touche' as some would say. A title to a song by Sammy Kershaw if my memory or what's left of it serves me correctly. Well, someone may have actually recorded it before him, but I do remember liking his version, especially with his voice singing it.

I am NOT "literally" speaking of any "incident" involving some 3rd rate romance or any kind of motel rende-anything... but the "feeling" you must have when you feel like you have some how it "bottom" of the pile of humanity. Those that seem to be sitting on top of you, and not even caring they are smashing your
"innards" onto the floor just beneath you.

I will say, taking totally up for ME, I've in all honesty, sick, not sick, felt like crap or not, kind of like "sickness and in health" have worked my butt off the past two years and honestly more, as a voice, advocate, volunteer, activist and Ambassador for the things I hold near and dear to my "stance" about humanity. I am definitely and maybe even a bit defiantly cut from a "different mold" than some. I would think that from the time I was about 4 years old, I totally became different than many kids, and later on, than many adults I have known or heard of. I have kind of "beat and whistled" my own horn and drum so to speak. I rarely go for the "normal" of anything. I've never felt being "normal" was anything but basically boring. And who in this day and age of almost being able to do anything... the SKY literally is the limit... would want to spend their life normally boring??? I did for years, OR I tried to "think" I was going with the general flow of those around me. Well, hell, I can attest that now I realize where I went, what I did, who or whom I met, saw, spoke to, and how I decided many years ago to live my life... was for many NOT considered anything but normal.


Sometimes I have to wonder if that is the reason I am "chronically ill".. as silly as that sounds, let me explain further. For those of us that are fortunate enough to have very little issues with our health, then you truly cannot possibly put "your feet in someone's shoes" that are chronically ill and/or in chronic pain. If you have been one of the people that rarely missed a day of school, went on to college, and the same happened, then you went out into the working world, got a job, and you just never miss work because of illness, surgery, and so forth. I have to wonder if that is even the "norm" now days. Maybe it is because I am a fully fledged "chronic illness" survivalist, that knows rarely a day that everything physically feels ALL RIGHT! It is usually one, two, three or more things happening to me physically, that effects my emotional and mental health also. If you awake to pain every morning of your life... you know without a shadow of a doubt (unless some miracle happened in the night) that you WILL awaken with some kind of ache, pain, or something that kind of makes your start of the day, a bit slower than many. For those like myself, that have to run to your desk (well almost more like crawl) take all of the "early morning" medication that you HOPE will give you a reprieve from pain, illness, or whatever maybe happening on any given morning of the week or weekend... so that is in itself is your 1st priority. Then you dive into go and turn on the coffee pot, and probably take a look at the MANY things on your list or lists that you either NEED to, HAVE to... get done... or more like what you can possibly PUT OFF until the next day or later in the day once your joints, bones, hips, shoulders, neck, feet, ankles, thumbs and probably the rest of you are kind of "lubricated", jump started like a small car battery, & then after the brain fog lifts... you maybe able to begin your day.

ADDING THIS FROM TODAY SINCE IT KIND OF GOES ALONG WITH THE ABOVE... NOVEMBER 9TH 2014...

AND HERE I GO AGAIN... STILL ON MY "SOAP BOX"....


As if I were not busy and stressed enough I decided to take the Defensive Driving Test again... just for the 10 percent off my insurance but all and any discounts help for sure. I am doing it all online which is great. But, damned I don't remember it being as long as it is now. It has been a long time I guess since I took it last. So, they have probably added more to it due to cell phones and all of the new technology in cars that can help and also hinder with distractions.... so now I am in the middle of that, along with waiting for Geico to answer a question before I change policies, and then I had paperwork to come in for another thing I am in that has to be done every 7 months, I have three appts next week, the dentist, blood work and my heart doctor, plus my last Arthritis Foundation Ambassador meeting for my year of training is Tuesday afternoon, so I find out it if I've done everything to be an Ambassador, plus possibly did the extra things in order to be a "Platinum Ambassador". I found out the article that I've sent to our newspaper goes in (either it went in yesterday and wouldn't you know I did not get my paper) or it goes in tomorrow. I had an email from the new editor of the paper. I had sent it in about 3 weeks ago, and heard nothing. So, I resent the email, and still did not hear anything. I went down there early last week with a copy of the email and the article. The woman told me then they were having a change of staff, thus the delay. Well, I got a very nice email from the new "editor" who told me he was going to make it a "Highlighted" Article in the "Life Style Page" with my photo on it and everything! So, it is in the works also... but through all of this, then have have a "week" reprieve from APPTS!!! - only to have ONE EVERY DAY OF THANKSGIVING WEEK!! I HAE TO HAVE my pain pump refilled 2 days before Thanksgiving, Mom and I see the PCP the Monday of that week, and then I have to go back to Dallas to see my Rheumatologist the day BEFORE Thanksgiving... when ahe the heck am I supposed to have any time for a holiday... sometime next year I guess!!! It is insanity, and that week will be nuts anyway, due to many being off the entire week, kids out of school, parents possibly taking a few extra days off... I hate to think about Dallas Traffic... especially during the week of a major holiday... nuts, they already can't drive on normal days, much less during holiday time... I dread it... MY problem is also I am not feeling very well at all... I thought a few days ago I might be either coming down with something, or had a flare coming, ... and I just have not had the energy I really need to get over all of these doc visits, taking care of the house, grocery shopping... speaking of... I went Friday for my "stock up" we are OUT OF everything grocery trip... and I knew it would be a load. I took in about 7 or 8 reusable bags knowing I would probably fill them full. Well, I got about 3/4 of the way through my list, and I was hurting so badly in my lower back, my right hip and lower back, and side began to just hurt like hell. My feet were hurting like they do in the mornings when I first get up, and I was just almost not able to push the basket around. I had to LEAVE off part of my list, get in line, check out, get them to carry the bags to the car, and go directly home. I was a total wreck, by the time I drove home, got 7 bags of groceries that I could barely lift into the house, and then had to put it all up... myself... Jim helped by helping me empty the bags and sort stuff out, but he can't bend over, reach up, get on a chair etc... so of course I still had to get everything put away, and was grateful I saved 46.00!!!!!! in coupons... but it took me a couple of hours to print some, cut all of them out and organize them, then get them and me to the store, and get them out and double check them as I bought items to make sure everything was correct and check out....then of course as I said above get them home, put up etc.... I have and continue to discover between the time it takes me to get ready, shower, hair, makeup, then to get everything prepared lists, coupons and so forth, put myself in the car, get to the store, and walk through a huge store then get everything home... it takes all of my SPOONS for the Day and then some... and IT SUCKS!!!!! It sucks to feel ill, it sucks to feel old, it sucks to look old, and it just all sucks right now.... I cannot seem to get myself organized enough anymore to keep me from taking 5 times as long as I used to before the illnesses....

Cute Story about Neighborly Neighbors & Their Friendly "Battles" Over the Years

I debated about posting this here first, or putting it on my blog with a link to it here. But, for now I will post it here because it is a "cute" little ordeal that has actually been going on for around 50 plus years. My Dad & Mom lived in the very first house my Dad had built in 1950. It is tiny. 2 small bedrooms, a small living room, a very small dining area that also is where the washer and dry are, a fairly small kitchen & alas the bathroom is just like a tiny box! We are talking about just less than 1,000 sq. feet! Back then that was in some ways considered HUGE! Many just could not afford a "huge" three bedroom brick mansion, with two baths and an attached garage. I begin telling this because you kind of have to get a bit of "background" about the neighborhood, & get the jest of why this is so freaking funny, especially to me. Mom & Dad had (and Mom still has the woman) a couple next door to them that they had known from day one of being there. Over the years they had cook out's together, went dancing together, Dad worked with the husband for many years at EBF etc. The wife, had been a nurse (at one time the only one that delivered babies with the doctors), and she was extremely dedicated and even after she retired, she went back to work for one of our doctors, until he retired, and she had too many issues health wise, so she had to give it up. Anyway, both my parents and them played "penny" poker sometimes on a Friday or Saturday night, went out to eat, and Dad and the husband were always kidding one another, from Dad Calling him a "tight wad", to him calling Dad silly stuff also. They would every once in a while get pissed and they may not talk to one another for a day or so, and then right back to the friendship as it always was. They had 2 boys. They were both several years older than me. And the neighbors house, like ours was very small, about the same size as Mom's & Dad's... and they raised those two boys in the tiny home. She still lives there till this day, just like my Mom... both chose to stay in the home they had always been in since marriage.
She, as a nurse, really did many, many things to help me. She was like a 2nd Mom, and sometimes it felt like my "1st Mom)! LOL... she taught me to crochet, make baby caps, and took me shopping in Dallas when she went... She was always teaching me something or doing something and would usually invite me to come. She is the very reason I so wanted to become a nurse. I "worked" as a volunteer Candy striper, she allowed me to do everything from learning to use the "autoclave" (back then it was used to kill the bacteria etc on the instruments.. there was nothing, or not much disposables back then. They washed, cleaned and then wrapped the packs of what was needed in certain surgeries etc... then put them in the autoclave to sterilize them. I even had my picture in the local paper one year holding the first "Christmas" baby in a red stocking we always made for them to go home in.

So, as you can tell our families were close, almost like being family members to one another. But, if Dad decided to go out and get a "portable gas grill", that family has to "one up" Dad, and have one put in the ground permanently and build a deck around it. If Dad painted the house, so did they. If Dad bought a new truck, you can bet they would have a new vehicle.... LOL, it got to be just funny, because they just could not stand for Dad and Mom to do something, without them feeling the need to also do the same or something similar. She had helped us out over the years when we were ill, or had a health issue, we always went over to talk to her first. But, just after Dad passed away, and just after I got back to Ennis to help Mom out, little did I know that her friend was "helping" Mom with her affairs financially, etc... but SHE bless her soul is just PUSHY as hell. She always wanted to tell everyone what to do, what to say, where to be, and if you did not do what she said, you can bet she would get pissy, and not speak for a day or so... But, as I said just after I got here back in Ennis, Mom & her had "words" over something I think... what I do know is that the woman, who had been like another Mom to me, quit speaking to me also. Even if she met me in the store, I could have ran over her, and several times I looked in her the face and said hello, but she NEVER said a word to me. Now I know my Mom sometimes can say something, & she may not mean it to sound "degrading" or in a bad way, BUT people take it that way. So, I feel my Mom might have said something or the friend did, & whatever it was it really hurt their friendship and mine, and I HAD NOTHING TO DO WITH IT! After I got here, Mom no longer needed her "friends advice" so I think that was part of it. She wanted to be able to tell Mom how to kind of "run her life"....now I am here and I am the one helping Mom out with the affairs... Well, about 2 months ago, after YEARS now of not speaking they began to speak a little... thus it is not all patched up but there is a bit of communication between them... NOW comes the FUNNY PART!!!! LOL... Last week I was at Mom's for the most part as they replaced her roof. Well, the gentleman that owned the roofing company came into tell us they were through... and then he said, your neighbor wants me to give her an estimate... MMMM, you must have known one another for a long time!!! We kind of looked at one another weird and asked him why he thought that. Well, Miss Goody-two-Shoes had commenced to telling him Mom should have had that replaced years ago, and blah, blah, blah, about how Mom should do this, & that I may not be giving her the best advice ---HAHAHA ----- We had to laugh in the first place, the ONLY reason for her having her house roofed is because she just cannot stand to be "one-upped" by Mom... and then that is just like her to mouth off about someone, and of course it had to be Mom and I! So, we told him a "condensed" story of the thing, and we all three had a great laugh over it, PLUS HE GOT THE JOB!!!!! So, whether she did need it or not.... I was happy he got the roofing job... And to read me tell the story, it is not quite as funny as "watching" it evolve after all these years... just goes to prove the old saying.. "Some things never change"... she is the same as she was when I was 10 yrs old... and I bet Dad and her Husband are in heaven still teasing one another... and her Mom & Her are, still the same... a few years older but still "friendly rivals"about how Mom should do this, & that I may not be giving her the best advice  ----LOL

A Dear Friend and Her Own Fight with Cancer at a very early age, now coming back with a vengenence

Denise, you are so welcome, and I so treasure our friendship. You always have a smile for me, no matter how badly you have to be feeling. I relate a "bit" to the chemotherapy, just due to the same types of medications they are using for the RA and Lupus. But, I know all of the side effects that go along with much larger doses of most of them, can make you feel so horribly tired, and really probably ready for the sofa than on your feet at WG... yet you always do just as the others have said, have a smile, a kind word, and for that you bless each soul that comes in and who has a chance to get to speak with you. Jim and I have just been so uplifted by your prayers, the card was just awesome for Jim, he talks about it all the time, and he got it from you just when he was having a down moment in the hospital. So, again you were "there" in words and spirit when he needed that so much. It is so very, very difficult to watch someone close to you have to go through so much "drama" to say the least in life. I still find myself "questioning" why? Why you? Why Jim? Why myself, and the many, many other people that are just kind, honest, and want to bring something "good" into the world have so much physical, mental, and/or emotional pain? I try so hard to not let that show, and I also try NOT to feel like my own health issues, and now with Jim's... that in public, I don't want to "burden" others with the sometimes gory, and sometimes almost down right unbelievable things that have happened to us, especially since about this past Christmas. I know some must think I am just nuts, and there is no way myself, Jim, friends like you... could have to succumb to so much, so quickly, and without a "break". My own health issues have just in themselves even brought my pain doctor to tears just last week, when I told him how much had happened since he filled my pain pump just over three months ago. Then when I tell him about Jim's plight in the midst of it, he was just stunned. He stood their shaking his head and saying he sometimes just can't believe people have to endure such hardship, whether in physical illnesses, emotional and family issues, and all of the mental anguish that some of us have to go through in life. I am sure him being a pain specialist and someone who served in the armed services as a physician, before his own practice he has
 seen and does see so many people suffer so much. And what truly makes that almost sad, is the very thing he wants to do in being a Pain Specialist, is HELP HIS PATIENTS... yet due to ALL of the rotten insurance companies, the government fingers all over Medicare, Medicaid, the Medicare Advantage Plans, such as mine, and those that come in desperately needing relief, yet they have no insurance, and just the cost of one medication could be more than anyone could afford in a month! He talks about it frequently, and he is very open about his feelings in how he cannot serve his patients as well as he wants, due to mainly the governments fingers in it all. Those doctors in a setting like him, with an office staff that is at least 7 or 8 people, all of the salaries and so forth, and I know by looking at what my Advantage plan "pays" him, honestly, he probably "loses" money on just me for one, when he fills my pump!!! I know for a fact he was when they were having to still do it over at the hospital in outpatient! They got "what little was paid" but most of that was MY OWN MONEY for my co-pay for outpatient! He was not getting a dime for months and months. Then after winding out of the bureacratic red tape of the government (that by the way MAKES HIM have special software in his office on his computers if he has Medicare patients that costs him something like 75,000.00 or more just at the beginning! So, finally after over a year of fighting over the "rules" of the games played, he can now refill my pump in the office. But. still he really only makes again about what comes out of "my pocket" which is the $40.00 co-pay. My insurance basically makes him "write off" the majority of the costs. Well, he nor any doctor can do a good job and try to "do no harm" as their oath says, when they either have to overload their practice with so many patients in order just to pay the bills, OR only take so many, cutting the rest of us out... for instance, and we are seeing it more and more with my Advantage Plan and now with the help for Jim... the doctors are turning away even Medicare patients! They simply are going broke... when a doctor like himself puts a pain pump in a patient like mine, his costs are high of course. But,, when he has to wait 2 YEARS, yes I said 2 YEARS & finally a "judge" tell Medicare to pay him for those patients, it is no wonder they are having to not take patients with these types of health coverage anymore. For that, it is almost blasphemy of our constitution, when we as a nation refuse to "HELP OUR OWN PEOPLE" stay well and out of pain!!! I witness this type of stuff daily due to the advocacy, volunteer, and ambassador I try to help out with as much as possible. I try my best to GIVE VOICE to ALL of US & I also mean people with "regular" health insurance also. I KNOW how much my own type of infusion medication for just ONE infusion costs, and what they expected ME to pay out of my own pocket! And I am supposed to have 2 infusions, 2 weeks apart, every 4 to 6 months! I am looking at over $1,500.00 for ONE!!!! So, I can imagine the financial burden you have to be enduring with your types of medications, doctors and the care you need!!!! I was relieved to see they are putting on another "event" for you! I just know those financial costs start soaring when you must have to have that type of care. It is as I said almost blasphemy to the American People! We can take millions of dollars over to other countries to help them, but we can't even FIRST take care of our own people!!! And I am certainly ALL FOR HELPING out other countries, I realize MANY of them are in much more burden, with basically no health care, and when we can any and all of the nations that can afford it should help out. BUT!!!! NOT BEFORE we GIVE OUR OWN RIGHT HERE what they need first! Take care of those that are right here, for instance our own food bank had a huge article in the local paper last night, pleading for money! They usually ask for donations of non perishables, good used clothing etc... but they came out and thanked all of us for the donations from the postal service we just did, BUT they are basically OUT OF MEAT! Things that are perishable, and they usually have enough finances to squeeze by for, now they are just about broke when it comes to providing our own in our community one of the basic things they need nutrition wise. It just made me so sad and mad that a community such as ours (and I know many families are strapped and cannot give, because they are the very ones that NEED the help) but we have enough corporate sponsorships, & those that can donate. Yet, as we all know just as I said about even some physicians, the entire nation, the entire world, is strapped for cash, as far as us "down" near what I am sad to say, but it is the truth "poverty level". Anyway, enough of my "rambling", except for the fact I am "able" at least for this moment "able to ramble" again. Honestly, I have felt my "voice" that allows me to write etc... had possibly left for good. But, one moment of being able to express my thoughts, even though they are rambling... is a good thing Rhia

A long winded post as I turn another page in my life..

sMy Dear Friend.... (some of this is about a group I have on the Care 2 website.) So, if pieces of this do not make sense, you will know it has to do with my Power over Chronic Pain and Illness group there... if you care 2 (now that was a play on words) :) know about Care2, the petitions, the news there, the network of incredible people... let me know and I will send you a link... there are thousands, millions of people on there daily trying to make a difference in all aspects of life for everyone....

Here goes.... thanks in advance for reading this... my best to each of you... you are a huge part of my inspiration and life....

Happy Monday and Good Week to everyone. I have been contemplating some things over the past three weeks or so, and am now down to making my decisions and moving forth with a couple of things I feel I am compelled to do, in order to truly feel I am making a difference in my own way.



Many of you already know I am a strong voice to try and help get laws changed, get Chronic Pain and Illness helped out with new research, with new laws, with proper training of patients, caretakers, doctors, and all involved. I am trying to debunk the "myth" in those with Chronic Pain. We are NOT a bunch of "drug-seeking" low lifes, that frequent doctors and ER's just to get "High". The majority of those like myself with Chronic Daily Pain, and Chronic Illness, just want our medications, we do not want to haggle over getting them with the insurance companies, with doctors, with the pharmacies, and with stupid laws that tend to make us look like we are horrible, terrible individuals. Thus much more needs to be done about the entire medical and health situation of all, but moreover, all of the stigma of having Chronic Pain needs to get reeled in. Yes, there are those that "abuse" the system. There are those that are not in pain that do go to doctors, go to the ER's and so forth for the wrong reasons. Yet, staticists show the numbers of "abusers" are extremely low, yet millions of people try and cope with their daily life, in horrible, excruiating pain, that harms their jobs, their relationhsips, families, and leaves them with little or no quality of life.

I am also an avid voice Against Domestic Violence, and Violence against Women and Children.. well honestly violence of any kind... but I stood in the fires of Domestic Violenc for far too long in my life... I was one of the fortunate ones, that did finally get out, but the scars in my mind, and on my heart, still remain at times.



Due to my Chronic Illness with Lupus, and Mixed Connective Tissue disorder, I also am an activist to get much more done about these life altering diseases. There has really not been any quality of studies done on Lupus in 40 years! You will read things here and there, but even though the rise of Autoimmune Diseases is rapidly increasing, we are almost in the stone ages in some ways when it comes to these illnesses (Diabetes 1, Multiple Sclerosis, Sjogren's, Lupus, Mixed Connective Tissue Disorder, and there are literally 100's more), and even my own Rheumatologist will admit, there is still so much not known about these illnesses and disorders. I just read an article about another "new" autoimmune disorder that children are born with, and it can affect them as quickly as after they are two weeks old.



Many of the autoimmune illnesses, are NOT that your immune system is "failing" and not working. Actually, like Lupus, my autoimmune system is overworking to the point my own cells are attacking themselves. Medications are few, and the majority of them carry side effects that over years can be worse than the disorders themselves. Corti-Steriods such as Prednisone is a huge one. It is almost like a miracle drug, when I have a Lupus "flare" yet the long term side effects can be awful. We have made much progress in the realms of Rheumatoid Arthritis, so that is great news. There is much research, many more new medications, and effective treatments to help deal with the daily symptoms of RA. Yet, as I said we lack much when it comes to many of the other autoimmune disorders.



Some of you also know that I am a writer and poet, "in heart". I have felt that my "mission" here on Earth since about the age of 13, is to touch others, and help them through life altering situations, by my poetry and writing. I was blessed with a wonderful gift, and I have tried not to allow it to go to the wayside. Yet, there are times in my life, my own "muse" per se, gets in the background, and I get caught up in other things of life.



I have been contemplating for years now, about writing a book or books. I even submitted many of my thousands of poems to publishers, and do have some that are published at a couple of sites online. I have been told my many, that my writing, the compassion and empathy that shines through my writing, and how I touch some is incredible. I only know and say this not to be patting myself on the back, but rather I know this, due to those that write me and tell me just how much my words encourage and help them. I even had one couple ask permission to read one of my poems at their wedding.



About 6 months ago, after having a long dry spell of not writing much as far as daily journaling etc., I made a vow to myself, that no matter what was going on, how I felt physically, how busy or not busy life was, that I would write daily, even if was junk.



To get to the point before running out of room, I am now making the desicion to split my "time", possibly do away now for some things I am doing online daily, and put the majority of my mind, heart, soul and time into writing my first book. I have contemplated what type of book I would write. Yet, from what others have said to me, along with my own husband & family pushing me, I will be writing my own life journey, through the abuse, the illnesses, the pain & suffering... tell my story, in the hopes that if I touch one persons heart, my "job" here on Earth shall be completed.



I am telling each of you this for a couple of reasons. First, I ask each of you to keep my in your thoughts and prayers, as I take a trip down memory lane. Some good, yet some not so good. I know there will be an outpour of emotions for me, as I tread through my heart & head. I also am having to choose what I will put on the backburner during this time. I don't know if it will take me weeks, months, or a year to write.

I have written since I was 13, yet I have no idea of how much time I will need to finish the book. I am also already looking into how to get it out to the public. I may try and send it out to publishers, but more than likely, I will try the self-publishing route. There are some really good self-publishing companies now, and they help out with promotion, and so much more. The expense varies, but I could save up the money to go with a self-publishing situation.



Here is where my main point of telling you this comes in. I am going to have to as I said in the first post at the top, put some of my efforts, causes, and pieces of life, kind of on hold during this time. I do know I will need to really focus much of my effort into the book itself, so that means less time on my blogs, websites, activist actions, my group here, and so forth. I really am having a difficult time with the entire "time" issue. I also have my own health problems that I never know how I will feel from one moment to the next. I can be fine and in a matter of hours, be in a full blown Lupus Migraine, be totally and completely fatigued and in a Lupus "flare"... plus a growing list of new symptoms that continue to crop up weekly it seems. I, along with my doctors, try and say it is all about the Lupus that is causing issues, yet a part of me feels there could be much more going on, other than the Lupus itself. Yet the symptoms mimic so many other illnesses, so I never really know.



One thing I know I will continue to work on, is my group here, Power Over Chronic Pain and Illness. I would love to have a couple of "co-hosts" that could say hello to new members, post information about illness, pain, and other subjects such as Domestic Violence.... and as you all know, I tend to discuss whatever is on my heart thus it could be anything from politics to gardening



So, if you feel like you might want to help me out here at Care2, with my ongoing group, I would love to hear from you. The group is relatively small now, but I would love to see it grow also. Yet, if I quit actively being here, I know for a fact, it would dwindle and be gone. Tis the life of being actively online... things are so lightining fast when it comes to blogs, groups, the internet, and technology. I also have a couple of other projects, other than being online, from quilting and crocheting, to our new garden, and all of my recent houseplant family I have purchased. Each of those things take up quite a bit of my time daily. Watering, feeding, keeping bugs away, and all that comes with having real houseplants, and gardens, plus daily errands, bills to pay, laundry to do, shopping, cooking, cleaning... darned I am tired just thinking about it.



As of yesterday, I got my software in order that will help me in organizing what I need for the book. Characters, chapters, thoughts, and all that I will need to get very organized first, the software helps with that. From there, then the actual book writing begins. So, my first things is deciding what I have to leave off my schedule, how long per day I will write (waxing and waning depending upon my health, doctors appts, and such)... then I have lots to learn about this book writing software. It is extremely detailed, and has lots to offer, yet it will also be a huge learning experience, to understand how I can use it to actually get my book completed.



I will tell you, my time will be limited here. Rather than spending 3 hours plus here daily with all of your incredibly emails, cards, posts and so forth, I am not disappearing, but if I happen not to answer an email, post or something for a day or two, you can be sure, I have read it, or will, but I may be a little slower in answering. I probably will hand some of the gardening, watering and such over to my husband. I will not be able to spend as much time keeping up with all of the petitions, causes and so forth, but more focus on just a couple, more about Health Care issues, and Domestic Violence. I also intend on keeping my group here for now, yet my "Myspace" and Facebook pages, may not get as much updating of information as they do now. Plus I have a couple of Yahoo groups I am a member of, and I will put those kind of on hold. I intend on telling everyone that I email etc. about my intentions. I don't want to lose any friends throughout this, so I want all to know my plans.



As I start to learn this software, pick and choose my times for activities, decide what to take off the stove for now, and so one, I ask each of you to please post or email me with suggestions, tips, what you see as something I could benefit from, help me get organized as far as my causes and times... and the book... and anything you feel that I probably have not throught about... that would help with time and so forth....



LOL, as I think about what I am writing here, I have to wonder how the heck will I fit everything in, even though I am cutting back things. I am sure as I begin the book itself, all will fall into place... I will fall into pace.. and even though it may never be published... it is two fold for me. I am encouraged by many of you, my family, and others that I can do this, and I do have something to say, that could help others.... and then I can prove to myself, I am capable of writing an entire book. It may not be an awesome book, but I can write it... start to finish... and learn a great deal about myself, life, and writing in the process.



I close this for now, since it is already a small novelette... in asking again, for your thoughts and prayers as I begin this endeavor, for any suggestions you may have, if you care to help on my group, please let me know... anything you feel might benefit this cause will be so incredibly appreciated.


Thanks again... and please keep in touch.... Rhia




"We can judge the heart of a man by his treatment of animals."
- Immanuel Kant, German philosopher