Showing posts with label author. Show all posts
Showing posts with label author. Show all posts

Friday, March 11, 2016

Dealing with Eldery Parents who have Alzheimer's or Dementia, when you, yourself are dealing with Chronic Pain and Illness...

 posted this on my FB page, and I will put it here also... I will be doing some work on my blog, my book, my new newspaper I have began, as well as some other things around my home, and some thinking about life... and how to deal with some really tough issues.... I maybe "away" from FB for a couple of days. 


There are some things I really need to get to working on as far as this new newspaper I am staring. I can customize is a great deal and it could really help me with my blog, as well as with my books , and my next book...plus lots of my advocacy work...getting information out there that would really benefit many people and help make what I want to happen possible ( I Hope)...I have also had some new ideas for my 3rd book unfold in my mind over this past couple of weeks, and although I jotted some of it down, I would like to start writing on it, in the beginnings of the book itself.... There are also some "personal matters" that honestly came up this morning, mainly to do with all of this mess with my Mother, and at this moment I am totally at my wits end, I have no clue where to go or what to do, other than leave her alone, and allow her to figure out "all is NOT RIGHT in her world".... she really hurt me earlier... calls me well before she is usually even out of bed, wanting to know "why I had not called or been by"...

well for one I was there two days in a row, just yesterday for one, and besides she is usually never even out of bed until after noon time... anyway, she asked me what I was doing, and then she told me I was a "blabber mouth", and I should NOT be telling my own kids what is going on... well I tried to tell her the kids are NOT stupid, and they "hear and see" and then she says they are never here nor never call so how do they know anything? So, I hung up... well I called back about 30 minutes later, and began to tell her to NEVER call me a "blabber mouth" again... that it for one hurt my feelings, and for two was NOT the truth, so then she began to tell me that losing her credit cards, not being able to work her stove, put her car in gear, not pay a bill correctly, not take her meds correctly, not know why the alarm clock blinked etc "meant nothing" and why do I even "care"... it is in the past... 

and when I said MOM jut yesterday I WENT TO GET YOUR MEDS AND GO TO THE STORE BECAUSE YOU DID NOT FEEL LIKE IT... so it not in the PAST it is right now... and she made some snide remark oh well, when we get there or if we do, we will handle it then... well WE ARE THERE! And she cannot continue to live alone, and if I tell the doctors about the car incident and and a couple of other things, they will tell her she cannot drive NOT live alone! As I told her and "building you a room" takes more than a few days.... she began to tell me I was full of crap, and nothing was wrong with her.... so I hung up with Okay, I will not "bother" you again, I am NOT calling, I will NOT come over there, and "if" you need me, then call, otherwise, I refuse to be hurt and used like a doormat and then laughed at when I told her that her calling me a "blabber mouth" hurt my feelings... and she said "she never even called me this morning"..... 

so, I have LOTS of things I want to do and get done, and I honestly right now am so totally sick and tired of this crap.... that she may wind up in a nursing home, if she does not want to listen to me.... I don't know what else to do.... but I need to get some rest myself, and do some thinking about several things... so if you do not see me here much, I am okay, just "out of touch" for a few days....

Sunday, January 17, 2016

Setting The New Year Tone as I Deal With RA, Lupus, Sjogren's, Trying to Complete a 3rd book, Life, Family and so much more...

Every Year so many of us have a "List to Live By"... for the New Year. Some call it a list of "resolutions", "Changes", a new way, a different attitude, motivation for making things different, making what you want in life happen... Whatever you "call" it... we try to set the "tone" for our New Year.

Whether "chronically ill" or not... each of us want things to "change". Now, many of us may be completely satisfied with our life "as is"... but human nature gives us this innate intuition to never stand stagnant, to always want to evolve, to make our mark on the world, or at least our own home and community. As a whole, although when you hear the news it does not sound like it, I still feel "human nature" basically wants to "do well"... to help, to be that change maker...

As I have prodded through these past 7, 8, 9 or more years of chronic illness and chronic pain, I've noticed that it seems for the majority of us that are chronically ill, whether it is an Autoimmune Illness, Heart Disease, Cancer, or any number of diseases, syndromes and/or illnesses "we" as a whole tend to try even harder to "change" what that disease is doing not just to "our bodies and lives" but to all the others we see on a daily basis suffering from the very same illnesses. We tend to be more a part of the "change makers", whether that means a local community awareness, or a National Campaign and being an "Ambassador", Volunteer, Activist, a "voice" such as helping so many of our non-profits, such as The Arthritis Foundation, The Cancer Society, The American Heart Association, Lupus Foundation, The Pain Foundation, and the many, many, charities and organizations that "go to bat" to fight not only locally, in our states, but nationally to make awareness known within our Governmental Bodies, to get finances for more research, the race for a cure, for answers as to "why" some of us suffer so badly from such horrid illnesses, what causes them, how to treat them without destroying a patients life, and how to give people back their quality of daily living!

So, when our chronic illness and/or oain issues bring us to the place we no longer can "work" our jobs, or do many things we once could do, we find ourselves seeking a way to help STOP these diseases from ruining more lives in the future. With the technology, and how we have evolved globally, with a few key strokes, we can contact our state, our county, our city, and our National Government Officials. We can provide all types of very usual assistance without leaving our homes to "make that difference" we so want to make in life. I know some people that probably spend more hours a day now as a volunteer, activist, etc... than they did actually working a 9 to 5 job that nearly killed them... but we can "take off" for a week if we are ill, or work an hour a day, or a few hours a month.... however much "we" want to put into assisting these foundations, is so appreciated. And many of us, like myself have been even honored and rewarded by being sent to Washington DC to stand on Capitol Hill and tell our stories! So, activism, can be and is such a rewarding part of a chronically ill person's life. We feel we are "contributing" even though we may not be able to work hours a day, or leave our homes... we "make a difference"... and not even spend a penny... but give of ourselves and our time... which is definitely valuable... sometimes more than money... the value of "our time"....

I had been looking on Twitter a bit ago, and there was a great idea that I decided to not only to share, but to do. Take an empty jar, and each "good thing" that happens within the New Year, jot it down on a small piece of paper and put it in the jar. Then in the start of the next New Year, get those out and read them. As I said, all too often we "recall" all of the crappy, the bad stuff, that happens within a years time, yet we don't remember those "good moments" and maybe they are "small" but memorable. Then see just how many have filled that jar from that year before. I have already been able to write down 3 or 4 things and put in the jar, and this is the middle of January! Maybe I will need 2 jars to "hold" onto those good moments... those moments that help to make the bad ones seem not so bad.

So, the "title" of this post, is a bit deceiving in some ways. I gave the impression this was going to me more about my own "revelations" for the New Year, and the "tone" of how I "want" my year to be for 2016. I've never been one to set expectations to high, but I do try to give myself "goals" to achieve... yet I have also had to learn that when you have illnesses such as Lupus, RA, Sjogren's.... and so forth... those things you "want to achieve" may get put on the back burner, for those times you are in a "flare", or you are having surgery, or sick, or going to the doctors... there can be all kinds of things that interfere with those "good intentions"... and it is not that you may not achieve them... just not in the time frame you thought you would. I had wanted to be a published author for 20 years plus, and then was with two books within less than a year between them! My 3rd book, has been sitting here mainly completed on my computer, but needing to be put in some type of order now for gosh 3, 4 or more years. But, life and illness... have had to come first... thus the book WILL GET PUBLISHED, but I no longer "pressure" myself... Due to things beyond my control over the last almost 3 years, I began getting it together, then had to leave it... now it will take me weeks to even get back into where I am, what I have in it, and how I want to continue... and I will get there... but I have to feel well enough "physically" to be able to sit at the computer several hours at a time, hopefully with little interruption for weeks, at least 2 or 3... or I will never be able to "delve" into where I am, and where I want to go forward.... so I may not be able to do as much as I want on it, until I have the cervical neck surgery... I can't sit very long at the computer typing right now because of that disc... when it presses down on the nerves, and I have pain in my shoulders and down my arms into my thumbs... it makes it very difficult to "find my voice" to write...

It is different with my blog... I can write a bit, get up, do a few things, and come back to "finish" the post...

But, the "tone" for my 2016 is to try my best to get as far on the 3rd book as I can to prepare for it to be published. I also need to get myself back into "physical shape" and I mean back to walking when it warms up, taking the dogs out walking, and getting out of the house... but I also face at least the one surgery... and maybe two this year... my lower lumbar and sacral spine gives me hell when I try and sit for very long also... and after Friday's ordeal of driving and doctors in Dallas all day long, I have suffered with a great deal of back and side pain... hell I've wondered if I have another kidney stone, the pain has been so bad off and on...

So, the "tone" again is to do as much as I can personally to my home, bless it's heart it needs so much work, and myself... and try to "enjoy" each day whether ill on the sofa, sitting here at the computer writing, or online...walking my pups... walking myself... and hopefully spending several times this year for a day or overnight stay at Winstar! Gosh how I miss that Casino! I walk in and the world melts away, at least for that time you are there...

So, take time to "set your tone" for 2016.... make yourself a "good moments" jar... and in 2017 (when I get to trade in my Prius for a New Model) see how many of those truly make you smile.....

Sunday, January 3, 2016

Starting 2016 The New Year Off Right! Lupus, Joint problems, Surgeries, Pain Pump Replacments, Cervical Disc Surgeries, & Seeing the "Positive" Side of a New Year.

Morning Everyone! Well, I must say, I know there are MANY, MANY of us that are GLAD to see 2015 come to a close. Gosh, the number of people that I've came in contact with both on Facebook, and here in my hometown, that have either endured so much loss, or have been extremely ill, in the hospitals, had surgeries, have had major issues with Lupus, RA, Heart problems.... Sjogren's and the list just continues.

I know I face, (now the the 1st one the pain pump replacement surgery is done) at least one surgery. I have to have that cervical disc above where my doctor repaired the others (he is kind of wishy, washy but I think it's probably C-2-C-3.. not sure but am going to look it up. He did an X-ray and saw that I have a disc, at least one, that is 80% "collapsed" which is causing all of the severe neck, shoulder blade, and down my shoulders, into my arms, wrists and even thumbs... pain... at times it is almost unbearable... if I drive even to Dallas about 40 miles or so, it hurts so badly... so I know that has to be dealt with.

Also, the lumbar/sacral disc at L-5 (I think) and S-1, anyway, right at the bottom of my lumbar spine where it begins my sacral spine is also a mess... plus I have some issues with the "opposite" of scoliosis, where my spine tilts "inward" rather than outward... and I've had a "sway back" all my life... so that is certainly not helping but I don't think there is anything they can do about that, but he can fix the disc down there.

Once those things are done, and then I can go to my Rheumatologist, and we re-evaluate all of my medication for RA/Lupus etc... and possibly make some changes then I may begin to see some positive changes for me as far as function of what I can do, and lesser pain, hopefully.

So, even though I "make" A New Years "change things" list... some of it is more those types of things, so I can again have some quality of life...

I also know we must "deal" with my Mom, and all that has been going on with her.... she is much better after the injections into her lumbar spine, which is awesome, but the issues about possibly having "dementia", or worse, ALZ, have to be looked in to...

Other than that, I want to be able to do MORE of my advocacy work, and get back to cross my fingers, eyes and toes, of finishing my book... I've been trying for 2, almost 3 years now, and was on a roll, then between the accident with Jim, the lawsuit, trial, illneses, my teeth and losing those, then Mom being sick, it seems I cannot either find the time, or have enough "energy" to stay and type on it. I have some other things that I had not thought about that I am adding to it. When I was telling one of my high school friends I grew up with about my "home life", when I was young... she told me that I really needed to address those in the book. They in themselves caused me to "think" and do, or not do things throughout my entire life. Nothing that Dad did that was "bad... he was a great Dad, BUT his being over controlling, even when I was in my 30's, and him trying to "help" but he was also trying to place things that he went through during the depression, "on and in my life"... and thus things like me marrying much too young etc... all have had a very prominent effect on how I've lived, and the things I've done, and why I didn't do some of the things I so wanted to do....

I inend on giving YOU, my BLOG READERS much more "facts" and information about "All things Autoimmune"... I hope to really ADD some very important issues, from medications, from how the government effects our lives, about the latest things to get help. hopefully get more people involved in GOOD clinical trials (I know people that have been truly amazed in clinical trials) and work with WEGO, The Arthrhtis Foundation, With the Pain Foundations, plus others such as the Lupus, Sjogren's, RA... and more things that can help YOU as patients, caretaker's. family, friends.... to understand the way these illnesses effect each and every part of a life, from physical, mental, emotional, spiritual... and why "we" do or do not do, things.... due to often "invisible" illnesses and pain....


One for instance, I had "major surgery" last Monday. I had my pain pump that "stalled" replaced. I am really not supposed to be doing much of anything, BUT I am by myself for now, so there are things I must take care of... and can't wait... So, I had not been to the market in a week, and needed a few things... NO, I was NOT feeling the best, but I got dressed, "forwent" the makeup, and went to the market. Well, I was not "moaning" in pain, or even acting as if I had "surgery"... the only things I did do, is ask the guy bagging my stuff to keep my "bags" light this time, because I was not supposed to life anything over 5 pounds, and was not supposed to use my arms over my head... well there are MANY things a person needs to get, reach, etc... and it calls for putting your arms over your head..

Of course I got home, and I was "good" I did bring in one bag at a time, rather than grabbing several, as usual... and tried NOT to do anything he told me NOT to do... yet, people around me in the market, unless I "told" them would have never known I had "surgery" or that I was in pain..... we sometimes "hurt" and it shows.. but we also have learned to "suck it up" at times, and try to not let that type of thing effect our lives... I don't want to think someone feel "sorry" for me... etc....


Okay, well I need to get some other things done, but I wanted to "catch up" as to what 2016 shall mean HERE, and what I plan to try and do to HELP MY READERS!

Wishing YOU and YOURS a blessed, healthy, peaceful, calm, faith filled, renewed hope and love for 2016!

Rhia

Saturday, June 20, 2015

Medicare, Disabilities, Chronic Illnesses, Chronic Pain... and going through the "hoops" to get the help we need...

Morning gals and guys... or guys and gals, however you want to put it. I realize I've been almost "quiet" the past couple of days, which is not like me.

I've been doing several things, from continuing on my spring/summer "cleaning"... believe me when I get into one of these moods, if it is not "nailed down" it may just get thrown away, given away, or whatever... but it will not stay in this house for sure.

I do this about 2 - 3 times a year. I guess we all have a certain "time" that we decide it is time to "junk away"... I am not a "hoarder" by no means. But, I do believe in hanging on to some items, knowing there will come a time, I will decide I need a certain item.

So, like many, I have a "guide" I go by. If I have not needed it, thought about it, worn it, looked at it... for OVER a year or a bit more... then it's time to either get rid of it, or decide to use it in whatever way I intended.

I don't like to be one of those who hangs onto every plastic butter bowl, or every coffee can, or old towels, sheets, or even clothes. Usually on my clothes, I have a few tops I wear around the house daily. They are probably not really fit to run to town in, but okay enough for around the house. Then I have some I wear for everyday errands. Those I wear to run errands in, to the market, to Wally World... and when they get to the place, they are looking kind of "not all that great", I use those around the house, and by then it is more than time to "chunk" away the other old house tops. You can bet by then, they are stained, probably are beginning to have a few tiny holes in them and so on.

As far as my "dressy"... more go to the Casino, out to eat, or something else ... that I feel I need to dress up for... again, I go through them a couple of times a year. If I have not put it on, thought about it, even remotely considered doing anything in it, then usually it goes to Good Will, if it is still in good shape. I try my best NOT to have LOTS of stuff, that is totally NOT going to be worn here in my closets. Thus, a couple of times a year during the season changes is a great opportunity to take them and let someone else get some use out of them. I do the same with magazines, books, and the like. If I can "reuse", then I do... if I can give it to others to recycle, reuse, etc... I do... If none of those sound feasible, then usually it goes over to "Soul's Harbor"... which is a store, that everyone does the same. Whether clothes, furniture, dishes, you name it... and you don't really want to throw it out, then we take them there. You can get a receipt for a tax write off, but I don't even worry over that. I always tell them, if you can sell it, or whatever... great, if you cannot... the get rid of it however you do....

Okay, so I've been in the middle of all of that stuff, along with getting rid of 2 old computers, an old desk, some speakers, and just some "general" stuff that rather than let me hauled off in the trash... we have a couple of people that come around and pick up some items, especially if there is any metal in them... they sell it to one of our "steel" businesses here. That way those thing get recycled, the guys can get a few bucks out of them, and that means less waste in our landfills for sure.

I know my family gets tickled at me. I can find some real "odd" uses for some stuff, but when I finish, they are totally amazed. A few years back, we had a pretty good sized tree limb come down. IT was pretty straight, and fairly thick. It was also long enough, in my head, I could see it cut into about 18 inch long pieces, and make flower arrangements with them. So, we cut them in a couple of different lengths. I went around my house and found some of my silk flowers, then went to our "Dollar Tree" and picked up a few more, and 'voila', I had three beautiful flower arrangements, at that time for Christmas!!!

I had one for my table, one of the office and one for the living room! Between some left over ribbon, and lace, a few silk flowers, some floral wire... and a bit of imagination, they appeared to be something you may buy at one of these "DIY" sales, where people sell their items they make. Then I got the idea, I would change them for the different holidays. So I had some flowers and things for Valentine's Day, Memorial Day, Easter... Thanksgiving, and one year even St. Patrick's Day! I found some "green silk flowers" and I had some white ones, and with a bit of green and white ribbon, that made a cute centerpiece on a table or on the desk, or sitting in the living room.

OF course, here I go again, taking the "back way" around what I wanted to write about in the beginning of this.

I read an article this morning about an extremely "lucrative" (for the crooks) scam that took place all over this nation, in regard to "false claims" from Medicare. This is such a horrid thing, ANY PHYSICIAN is NOT a true doctor, if they are ripping off their patients. That is called greed, and any one in the medical profession and others are no professional if they take advantage of something as "fragile" as Medicare is. It just burns me to NO END, that the very people that NEED to be seen by physicians, that cannot AFFORD for our Medicare system to go "belly up" are the ones that suffer from this unspeakable crime. Even though they took down the largest fraud ring ever in this, I am sure there are others out there doing it also... and it appears that Medicare has tightened up and is paying more attention to these kind of schemes. Florida of course is a huge one, but there were several states including Texas involved in this.

Due to migraines, chronic pain, fatigue an  ALL THAT GOES along with disabilities also, NEED there disability (Medicare) also to help keep their health hopefully in check. I know of course some of you are not thrilled about the idea of those on disability... but I PAIN into my Social Security and Medicare for over 25 years before I had to file for my disability. So, I don't feel that I've taken advantage of anyone or anything. I just could not work anymore due to all of my health issues, and I've had to accept the fact, they are NOT MY FAULT! The Lupus, Sjogren's, RA, and so on... "just happened"... I've done nothing as far as I know to cause them....


IT took me a long time to understand, I am not to blame... I didn't go and do something within my life, as far as I know to "cause" me to become ill. You would be surprised though how many of us want to blame ourselves for it,

No chronic illness and/or chronic pain issue is FUN! They are all serious, and they change your entire life and your quality of life in many instances is truly sunken into the depths of the unknown... losing friends, spouses, family... to those horrid diseases, that we have little or no control over.

All we can do is take one step in front of the other, one moment at a time... and continue to hold on to what we can do, have, and hope for in the future.....

I've not disappeared at all... just been extremely busy... for one, fighting of two flares, making changes around my home, as you see above, and trying to fit some of the pieces of me, that seemed to have gotten lost in all of the drama... of daily life....


http://www.medpagetoday.com/PublicHealthPolicy/Medicare/52207


Thursday, May 28, 2015

When it finally "dawns on you" why you seem so totally living in "chaos" even above the drama of Chronic Pain and Chronic Illnesses

I have spent moments, hours, days, weeks, even I am sure YEARS trying to figure out exactly "why" my life seems to be in a "chaotic" whirlwind almost daily.

Yes, having autoimmune and/or any type of "chronic illnesses" along with "chronic pain" puts your life in turmoil more often it seems than not.


Yet, that still does not explain why, with only 2 adults, 2 pups, in a tiny two bedroom, barely over a 1,000 sq foot home, and a back and front lawn that are definitely average in size, along with a "back forty" a small bit of land that up until this fall had the neighbors sheep and goats on it, so we never had to be concerned on it. Why it seems that EVERY DAY of my life I look around, and I am constantly dusting, vacuuming, mopping, sweeping, picking up things, doing laundry, taking out trash, scrubbing tub and toilet. Yet both inside and out, I feel like it appears that this house is dirty, and it is just falling down around me every day a bit more.

When I bought it, I put a LOT of money into it, there was still SO MUCH "restoration" that needed to be done, yet the money ran out. So, even though there was at least 10,000.00 or more put into it, for painting, redoing floors, carpets, furniture, redoing plumbing, a lot of the electrical rewiring, lots of new plumbing, a brand new shower/tub, a new toliet, taking in a wall, knocking one out to have a bit of closet space and to make the bathroom larger. Yet, when it came to redoing flooring in the bath, kitchen, doing the finishing work i the laundry room, a carport had to be put up, and now the list is still endless.

We had some storm windows put in, and had a great deal of insulation put in the walls and attic. Yet, one bedroom did not get the new windows, and the windows are so old, the glass brittle, they lack most of the correct Pins and "glazing" that should be around them. That entire room has really never had been redone, so it needs paint, the windows repaired, a new ceiling fan, carpeting laid, and along with now the outside of the house needs a complete paint job, and some rotten board repaired.

So, I see one of my "mistakes" was not considering just how much MORE I needed in finances to really PUT this home back to its original state. I lacked about 5,000.00 back then, and now with other things going on, it is more like 10,000.00  more that needs to be put in... a new roof, the ceiling in many of the rooms really need to be either repainted or redone. The floors in the kitchen, bath and laundry room laid in. The walls that are in the bath need to be some still put in, and/or "mudded" and textured for paint. So, I should have known that without ALL of those funds, trying to "make" this house "look" neat and clean is very difficult, if you still have "portions" that are not yet up.

So, I look around, and even though SO MUCH work was done, and ALL for the most part myself and my husband did it all. From redoing hardwood flooring to painting, texturing, putting in a larger shower/tub, all of the plumbing, still the house no matter HOW MUCH I clean it, to me it looks dirty. I can dust, mop,sweep, do laundry, and almost every day it could be done again. Nothing ever looks "clean". Even though I KNOW it is, when it is "old" stained, and needs replacing, it just never appears to be clean.

Of course, then there were a stove/oven, the refrigerator, the washer and dryer, bed, furniture for the living room, and the list of all of those things, from the "renovation" work, to all of the other items needed to run a home, lawn mower, weedeater, tools... we had to buy a huge array of tools, saws, screwdrivers, wrenches, tree trimmers, you name it, of course if you do lawn work, and work around your home, you know just how many tools that can take. Blinds, curtains, sheets, towels... yes, we had "some" of these after being together for a pretty good length of time, but even those were beginning to show their own signs of "wear and tear".

So, then come along, and I became "chronically ill" - with autoimmune illnesses, that led into many surgeries, doctors, tests, you name it, I went through it. It seemed endless. Then, many of the things I could do, no longer was I able to do, when it came to the DIY around the house. I had both knees replaced, a shoulder replaced, surgeries on other joints, my neck had to have surgery, then I had "double hernia" surgery, not that long ago... thus me being able to even, "mow", do things in the yard as I once did, many things in the house, either I cannot do them anymore, or it takes me 5 TIMES as long as it used to.

My energy level is constantly up and down. The fatigue at times is just horrid. The brain fog, now has "captured" my mind so much, that even trying to write some days seems like it might be impossible.

So, now after being in this home, that we loved, we wanted, we wanted something we could "FIX UP" ourselves... yet, now it needs a new roof, we need gravel under the carport, windows finished in that back room, carpet laid in there, the house needs a painting all over... and again the list is endless .... and again it seems no matter how much I clean, how much I sweep, it seems nothing is ever "finished" or clean.

Texas is known for its "dust" that seems to come from no where. But, there is a constant battle with a grey dust that seems to settle daily on everything. As I said in the beginning, it just seems endless.\

What makes it even worse, I would much rather be here, at the computer, writing my book, so I can get it published. Yet, that always seems to be the "last" thing on the bottom of an endless to do list. So, by the time I reach down and pull up more things to be done, I am too worn out, physically, mentally and emotionally to really put myself into the writing as I want to.

So, now I sit here, daily, wanting so badly for things to just STOP for a few days, stay clean, not have endless errands to run, or things to do like shopping, mail, laundry, cooking, mopping, paying bills... all of that could just be put on hold for a few weeks so I can have some quality time to write...

Right now, it is almost 1 PM. I am on "empty" as far as energy, with sheets to be put back on the bed, and other clothes to be hung up or put away. I need a shower, and I'm drenched in sweat from the humidity. I have already swept, done laundry, mopped, dusted, including under the bed, behind it, and so on, it id trash day and after a holiday and a massive amount of bad weather I had 3 can FULL of not just trash, but limbs, and 4 other huge limbs too large to cut up. In between, I've done some things on line, but I am worn out from these past few weeks of energy.... and it seems there is never a break. I began trying to work on the inside windows in the back spare room. Well, that is going to take time to sand down, fill in so many places with wood putty and then get them ready to paint. After that, they have to be fixed from the outside with the pins and glazing which is very time consuming. I have a total of 5 windows, all of which need that work on them. I actually still have a broken windows from the hail storm last year. I had hail break a window when I was ill with pneumonia, so it is taped up and sealed up the best I can until I can get it measured and have someone to help me put it in. I can, but I need another person to hold it in place, as I can't hold it and pin it at the same time..


So, hind sight is "20/20".... there are so many things I look back on now, and so wished I would have done differently. I can't tell it all here in one post, but from some of my "relationships", to homes, to where I am living in the nation, to health problems, jobs... and TIME to write my book! That is probably THE MOST important thing to me, is to FINISH THAT BOOK AND GET IT PUBLISHED! But, how does ONE person do it all? And then have enough "time and energy" to feel like doing it all, and then spending time on my book daily.


By the time I've been up since sometimes 5AM, and 4 PM rolls around, I am totally exhausted. I wished I had an easy answer... I wished I had any answer.....



Tuesday, April 21, 2015

WEGO Writers Challenge April 20th, 2015 - Reflection... Your ambitions, hopes and how things have came together for you - Reflection from Life, to Chronic Illness

Each of us, no matter whether we are an activist, voice, Ambassador, Volunteer, all have some set of "what we hope to help do, and what we feel we may gain from doing those particular activities.

Whether you give out lunches in your home town daily to the elderly, or you have a blog that is all about how you want to help others through horrendous illnesses, whether it be mental, physical, or emotional... for the most part, when do you any type of event that is "volunteering" it comes from within your heart and soul.

Most of us "expect nothing" back. We don't expect a "pay check". For many of us, notoriety, fame, being "patted" on the back is really nothing we feel is necessary. We "GIVE" because that is what we want to do. That simple act of "random kindness" gives us feeling enough inside knowing we did something "extra" for someone's day. Maybe that door you held open for someone behind you, helped them put a smile on their face, in the midst of a terrible day. That "E-card" to a friend who is ill, who maybe overwhelmed, who may be feeling like life is a bit too much, and their comes that special card, just when they need it the most.

So, reflection back on my life and all of my "volunteering" even when I was 13 years old and was the only "Candy Striper" at the hospital at that time. Those days there taught me so many valuable lessons about life, people, the medical field, and gave me a chance to give of myself freely.

From there, whether it be a shoulder to cry on, a friend needing a lift due to their car being on the blink, sharing a cup of coffee with someone upset, just telling the checker and the guy doing the sacking at the grocery store, "Thank You!" and that you appreciate their help.

I've had to "overcome" some issues when it comes to I guess you might call it "pride". Before I had all of the joint issues, surgeries, Lupus, RA, and so on, I usually took out my own baskets from the stores. It was just something I did, and of course many of our stores now don't even offer the service. Fortunately, our local grocery store that is here in Texas always offers the assistance, which is a good thing. I know for the elderly people it is a huge help, and when I am having issues with my back, or joints having had surgery, or just not feeling well. It truly does help to have someone take the basket out and put your groceries in the car. A great example for me just a couple of days ago. I noticed our market was really busy. They were trying to keep up with checking and getting the merchandise sacked. So, at first I told them, don't worry about it, I will just take it out myself this time. Well, I should have allowed them to. First of all, the way the parking lot is designed, you are on a slight slope as you come out of the store. Of course that makes it a bit easier to push the baskets. But, when I have a huge bill of items, or heavy items, that basket will try and "run away" from you outside. I had a gentleman that had his two young children with him, stop and help me hold the basket that day. I was so elated to see we still have some awesome people in this world. I commended him with a huge thank you, and I also commended him for having his two kids, and they were younger children with him at the store. Often times, you don't see as many men with their younger children especially at the store. So, it was just an all around "thanks" for everything I witnessed there within a few moments of this gentleman.

So, whether it maybe reflection on advocacy work, or having someone help you out when you least expect it, for me, my reflections are on those that do some wonderful things and their not expecting a "thank you" for it.

My "hopes" are that I also continue to "share" a helping hand or a thank you.  My goals are to become that "author and writer" of a book that truly will help others. Some of those things have suddenly within the last weeks came together.

Then there are many "detours" that come along, unexpected, that can delay all of those ambitions, hopes and what we feel we truly need to accomplish in our time here.

The chronic illnesses of course have all too often caused a delay in some of my goals, dreams and wishes. In fact, there are some of those things, that I may never be able to do again. At times that really bothers me. Yet, I also try and look back to remember when I DID do that thing, or I DID get to go to that concert, or vacation... or something as simple as now I am looking forward to being able to get away for a night, and have my Mom and I take a couple of hour trip to the Casino and possibly spend the night.

I also hope that my own health will hold out, so I can become a better advocate, activist and an Ambassador. I hope to be able to go back to Washington DC next March and once again "give voice" for ALL of us with these horrid arthritic illnesses.

I can also reflect on the facts that I feel I've "built" a very good repoire with the "non-profits" that I advocate for. Or really I should say I feel they have truly "taken me under their wing" and given me some amazing opportunities to be the advocate, activist, Ambassador and Volunteer that I want and will continue to want to be. So, I say a huge "Thank You" to all of those that are so incredible in the realms of health and helping others. 



Saturday, April 18, 2015

"A Tagline" for my patient experience! WEGO Health Wtiters Challengs April 17, 2015! #HAWMC

My very first thought is exactly what the "title" of my upcoming book is:


"It's Not ME! It's The Disease    "Stupid"!


Well, the first thought was to add the word for description   "Stupid" at the very end. Of course I surely want people to read my book, so the very last thing I would want to do is offend someone with the title.

Of course, everyone that totally "gets" the brain fog, the lethargic fatigue, the times when you are just too ill to put makeup on to go to the market, and all of the other "times" that come with these insidiously mostly invisible diseases.

This is due to the fact, that we have SO MANY that do NOT understand any type of what we call "invisible" illnesses. 

There are times that either "brain fog" causes me not to be able... to probably makes sense to some, yet I feel they just don't "get it!"

Sometimes I would love to wear something around my neck that says "I TRULY AM NOT WELL!! Just because I may "look okay" and run out to the store, yet at home I look like hell! And there are days I DO park in the handicapped sign zone, and sometimes I don't. Yet, I have those that "stare" at me, as soon as I am getting out of my car. They think if I am not on crutches, a walker, cane, or almost crawling into the market, then why would I have that sign?

When I am upset, often it is due to the pain, physical, mental and emotional. So, those that don't "know" me, probably due to NOT listening or seeing what they should, they are mad because I don't go out a certain time, or they wonder why I can't mow my yard.

There are all kinds of things that go into what we call "Invisible Illnesses and Pain". There are days I am in horrendous pain, yet something may have to get done, so yes I go out. Just because I am out, don't think I am "better".... with anyone you know, that has illnesses such as Lupus, Sjogren's, RA, MS, FM, Chronic other back disorders, migraines, chronic pain.... there are MANY of us that walk thru life, and MANY people out there that don't "see" it, yet even with the "invisible" there are symptoms and signs to watch out for.


I now have to make lists, to remember my lists, so I don't forget my list! One day I maybe hand washing my car, the next I maybe on the sofa unable to move. Or Worse, one moment I can "appear" well, and within hours be so severely ill, that I have to go to the Emergency Room.

So, if there was a "tag line" that I could wear, use, put it on my door, or in my car, would be   - "It's NOT ME!  It's the DISEASE!!   - maybe or maybe not with the "stupid"


Also, one other that truly resonates with me is::

  "Life's Too Short! Eat Dessert FIRST!

 

 

WEGO HEALTH Writer's Challenge for April 2015!  "Your Tagline"...

Wednesday, April 15, 2015

#HAWMC WEGO Health Writer's Challenge April 16th 2015 - "Life Goal" - Can you Achieve it ot possibly more than one -

The one goal that I've been working on now since I was about 15 years old, is to be an "author and writer" and have my books published.

That had been a goal that I had committed myself to, back then even as a teenager. I guess I really never gave myself a "time frame", but of course it is something that I want to do, and be able to see if what I write helps to make a difference in someones life.

Of course a "portion" of that goal I have already achieved. I had the honor to have not just one, but two of my books published in 2013. They came out about months from one another. Those were poetry and prose. And each time I hold one in my hand, I am so thrilled at the accomplishment I achieved.

Yet, the #1 goal even in the author and writers achievements, is to finally put all of my "life's journey" through the many things I have done, endured, and certainly will have a up close and personal look into my chronic illnesses and pain. I am working on that book, already have "named" it and got a "cover" for it done. I've gotten many of the chapters already completed, so I am on my way to hopefully completing this goal at the end of 2015 or early 2016. I just feel between my blogging, my activist, and advocacy role, and being an Ambassador, I am "giving of myself" exactly what I am supposed to be accomplishing. But, this book is what I hope to truly make others know for sure, they are not alone, they are not crazy, and all they experience it truly not "acceptable" as far as health goes, and we must try to move forward, to achieve victory over Chronic illnesses, such as "autoimmune diseases and others" and chronic pain.

I never fulfilled my greatest "desire" or goal that I had thought might happen very early in my life. That was to be a nurse. I also dreamed of being able to write my own songs, the lyrics, music, and sing them too. I knew a long time ago, I would never be the next "bright and shining" star of the music world, but I can dream about it.

Of course, I've had to "redo" my "course" several times when it comes to completing this 3rd book. I find myself taking on way too many other things that to me are very important. When I allow that to happen, then I have change my course, and get back on track of what I truly feel is the most important, which of course is this 3rd book. I have already decided there maybe yet another to follow it, and give more insight to things I dealt with in life.

        

WEGO Health Activist Writers Challenge!

 

Wednesday, April 8, 2015

My First "Victory" 25 Chapters in my latest book written and a huge word count over 50% finished!!!!


I JUST officially HIT Chapter #25!!! In the latest book I am writing!!! I now have 47,383 WORDS!!!! I am so elated. Much of it of course will have to be gone through, spaced, and so on... going to take a great deal of going over, and over.. and then going over it again to have it to the "publication date"... But, having that much into "copy" for now is exciting!! Jim just looked up the "typical" word count for a book such as this, and it is between 80,000 to 90,000 WORDS. So, I am at my half way or more point in the writing process... I have to admit I HATE proofing!!! I get so tired of looking at it over and over.. so I always have Jim also proof it for me several times also. That way, hopefully between the two of us, it is "readable" and makes sense. I know with this "brain fog" that seems to be growing worse by the day, I tend to find myself "repeating" something that I may have written a few weeks back. Now, to "take up" for myself, often that is because some new light has been shed on the subject, or I've gotten more news, did further research and so forth. Thus I may post on the "same subject" several times. But, I do find myself "forgetting" much more than I used to just a year ago. It really concerns me... BUT for NOW I am going to feel very "elated" that I've made the half way point in my book that shall be titled "It's Not ME! It's the Disease! ( actually when we first came up with the title, we almost wanted to ad in "It's not ME Stupid! It's the Disease! Yet, I don't want to make people feel stupid or any thing like that... because these illnesses are extremely complex, and my entire reason for writing them, this one especially is to help make people understand these illnesses better.... also I am now Kicking the Can around on making this a "2 Part" book... In other words, publish this first one, yet move on forward and write #2 - like they both should follow one then the other.... I am still thinking on that one... and I'm not sure how I feel about this whole "Volume 1, Volume 2 etc ordeal... I am not a huge fan of it in the movies, and the only time I really loved it is in the 4 books "Twilight, New Moon, And The Twilight Saga, Part 1 and art 2" Those really and truly "fit the bill!" But, of course I will always be a writer and author and if by the Grace of God Go I, my intentions of course are to publish more in the future. But, I've thought about taking a stab at writing "thrillers" based on "medical things gone bad" etc... there are so many things out there now, that would make for incredible thrillers with the medical issues today, that I have really given that I very big possible yes... plus I am still writing on the "Texas Sayings" so it will of course be much smaller but I am also going to publish it too....

Friday, March 13, 2015

Changing of The "Plans"... asking for positive thoughts....

Please keep "positive" thoughts my way as I try to delve into my 3rd book. I've been working on it off and on for a long while, and really began to watch it somewhat take "shape" after the first of 2015. But, I was also trying to juggle writing it, all of the errands, bills, groceries, shopping, house cleaning, cooking... and of course that list goes on and on... along with all of my activist, advocacy, Ambassador, and volunteer work. Now, I have tried to come up with more ways to make some of the daily "drum" of life, play a different tune for me. I've re-organized (or I trying to) how I deal with the daily things that all of us must do, and also be loyal to my own blog and book... PLUS remain a huge VOICE as  I feel I must in the realms of my advocacy, activism, volunteer, and ambassador work as well. I never want to "negate" how critical I feel it is to give true "voice" to those out there with these often daily, chronic illnesses, pain, and make sure I am doing my part to help in that also. So, as I try to "coordinate" more, "combine tasks more"... and give myself plenty of "quality time" to write. I can't write 10 sentences, then have to get up, leave, run errands, go to the market, do laundry, and 4 hours come back and pick up where I left off... my mind just does not work that way anymore... with all of the brain fog, as well as stress, and the "business" of life, I have to allow myself to "tune out" some of those things, and let go of some of the stuff I tend to lay way too much priority on, that I need not. I don't have to have every dish, every towel, every floor, every inch of my car.... all in "perfection" .... some of that type "A" personality, must go... I've had to face that my mind just won't and cannot deal with way too many "irons in the fire" at once. When I do that, then I am more concerned about "doing" other "stuff", then do the "stuff" I WANT and need to do... LOL... no that does not mean I am going to have bare cupboards, do no cooking, never clean, or do laundry, not do all of the daily items, but I can do them in a bit different manner, thus freeing a "chunk" of time up to write, to do my advocacy work, to work on my blog... and so forth... thus that is my plan, and goal... of course like all great ideas, that may not come to fruition either... but I can try... plus I've tended to "neglect" the fact that I am in a GREAT DEAL MORE PAIN, than I wanted to admit to myself and my doctor. There is something going on, whether related to the RA, Lupus, my hips, osteoporosis... or what ever... that is causing me a world of hurt, that was under control for a long while. So, that may mean reconsidering my "autoimmune medications"... and also opting for more medication coming to me from my pain pump, in another small increment. I had it put in around October 2010... and for the 1st year, we "adjusted" it almost monthly... then we got it pretty well working as well as it was going to.... and 2 years ago, I went through another spell, where I was in "intractable" pain... again lower back, hips, legs... we adjusted the medication then, and there has not been a change since that time. So, I did tell my specialist last time he refilled my pump, that I was "jumping up" on the scale of pain... and he did "up" it a tiny bit... which is always how they have to handle it... but even with that, I am still in too much daily pain... and even though I and everyone knows we are NEVER completely "free" of pain... it just does not happen... so... I am going to ask him next week - Jim has an appt with them on Monday, about coming back in and having him "Up' the dose again. From there, I will be probably working with my Rheumatologist on trying a different "combination" of meds for the RA/Lupus.... but I really don't see him until May... yet I can email him, and sometimes he makes changes in between visits, since he is so swamped with research, teaching and seeing patients... that our visits are usually far between... Anyway... that is where I am at this moment... and I shall put one foot in front of the other... (by the way I have MY BOTTOM DENTURES FINISHED A WEEK FROM TODAY!!!!!!)))))) THAT WILL BE A HUGE HELP ALSO.... Thanks all... Rhia Steele​

Sunday, January 11, 2015

Finding a starting point or possibly a stopping point... OR maybe there is no point at all... All in a day of Autoimmune Illness

I've been able to allow words to just pour out of my soul on Facebook, and here in the past week or so. Yet, when I put myself back in "alignment" to begin working on my book, again I lose all of the hope I've had to begin...

It is not that I haven't began... Gosh I've probably written enough for 2 or 3 books. Between here, Facebook, and other places I post in detail all types of my own personal experiences with these hideous illnesses and maladies, to the some times irreparable dealings of some medications, and the problems they can cause... and moreover what is so very frightening I have came to the conclusion that there is something else physically going on with me, that the doctors, tests, lab work, and so forth have not been able to pinpoint yet.

As I've said now for awhile, either there is much more to my health issues that need to be looked at. I realize that many of the symptoms of any of the autoimmune illnesses can really be "overlapping" in nature. It is a defining moment in any life when a physician can give you a "real name" for a certain symptom, or chronic illness. At times the answers are truly vague at best... and the chances of getting a proper diagnosis at the very first trip you make.

So, now the question is, how do I go about trying to find if there is something else wrong, if so what doctor do I consult, and what will happen if there is another AI involved, like MS, MG (myasthenia gravis), and so on? More than likely, unless it is MS, they have came up with some great meds for it, BUT some of them are already things I am taking, or they are so new and so expensive, my insurance would probably turn the noses up and drowned in the rain, if I was prescribed one. You can believe, if it can happen, or will happen, or has happened ... then it has been with me.

I am seriously debating where I go this year on my blog... and if I want to continue to grow my audience then it is imperative that I work it and work well. I don't want to lose who I have and of course I want those that are already coming here to be excited about the new year and what I am going to say... and how I am going to say it.....

So, bear with me, as I take my own heart felt words, and pour them out in different ways. I am trying to experiment on my blog, so I can have a better understanding of writing my 3rd book.

More often that not, (and I just had an idea today, that I think I am actually very seriously considering) it is bad enough for the "same of stuff, day after day, to step into your path of consciousness. Those types of things tend to cause a huge road block  for those of us who already suffer from massive brain fogs at times anyway. Then to try and work around all of it, and have something come out that maybe worth another persons time to read is a monumental task.... so right now, I only know to crawl up the side of this mountain and begin the book.