It Seems that "wrong" keeps going on and on and on"

 It seems I just can't get a break anywhere. I had the Cataract surgeries. I got the impression I would ONLY need reading glasses. So, I go in for a two week visit to my optometrist & he gives me the impressions I still need some fixation in them even far off. Well, the cataract surgery was supposed to get rid of the astigmatism & it should have only correction some for reading. So, after I saw him I went over to order the glasses & of course I don't think they took the "prisms" in mind when they began getting ready for the surgeries.

Which I thought they would be corrected so the "double vision" would also be corrected also. In fact the eye surgeon told me I should not even need anything for distance, should be able to drive without glasses & after the surgery they would write me a letter stating the surgeries had corrected my driving night vision & issues with "halo's at night etc") and they should take the "needing lasses to drive off my license)". Well, in the first place they still put the prisms in the glasses, which meant some of the double vision was not corrected, & seemed these lasses were not "just readers" but I would need them abut as much as I needed \ before. After all the many weeks and UCH $$$ I went through to get rid of cataracts, & yet things are not a that different. I realize sooner or later I would need cataract surgery but my guess is I may have been able to wait at least another 2 years, got new glasses & by then get the cataract surgery. So, they order my glasses, which when I trie the new frames on I like the "sample ones". They seemed to be as good as my last frames. Which honestly I have 2 sets of frames from my last two pairs of glasses that are like band new. I take care of them so well, I never "usually" have any issues with frames. So, they send me a Text message on Wednesday the new ones were ready. I go to pick them up & I have not yet worn makeup simply due to allowing my eyes to have time to be completely healed & not get an infection from makeup. And the frames are a bit different than my last 2 pair. They are a tiny bit bigger as far as the shape of them and the color is kind of a rose pink. When I tried them on in the store as I picked them out I liked the color on me. she hands them to me (and these frames are exactly the same price as my last two pair) & s soon as I went to put them on they felt, "off". Like they were "loose" on the front pieces.My other ones never felt like that. I told her & she took them in the back & ent to fix them. She was gone quite a while, came back & said, yes they were "loose" at the front screws, so she went through & made sure they were all tight. Well, I put them back on & something still felt "off" but I decided it was just because they are brand new, made a bit different & I just needed to get used to them. After I got hoe, I took out my past pair, 7 noticed just how much "better quality" my last were were. In fact these new ones, are "crooked" when I lay them down on the desk. One ear piece is up in the air & the other laying kind of like it is bent to the inside rather than them being both nice and straight, as my older pair are. Plus I ordered them with the tint when in the sun & they were not getting darker like my old ones. I went on to Ennis, but I am so disappointed in the glasses, still also in the surgery ... plus I used to always get a copy of my "prescription" which I was not given. I like to keep a copy of them so I always know how much they have changed from one script to another. I sent a message & asked for a copy of my script. I decided rather than make a fuss too quickly I would wear them over the weekend (they had been also slipping down my nose) The nose pieces are far larger than my others. Then I AM going make make them either put these lens in another pair of frames like these. I think they ""twisted the frames or did something to them as they made the glasses. When you lay them down they just look crooked. So, there is yet another $$$ & they are NOT Nearly like I had THOUGHT THEY WOULD BE.

"The Texas Blues" written and sung by me

I don't have the guitar or me playing the song but he is one I wrote back a while ago, and added to it lately... I am a bit off key LOL... plus I've had such a sore throat lately, I have a difficult time trying to sing.. after the last neck surgery, he really did a number on my vocal chords going in through the front of my neck, so I've not yet gotten my voice back as it was and may never get it back all the way....

"The Texas Blues"copyright 2010 Rhia Steele

Saturday's New Addition of my Newspaper "Life with Chronic Pain and AI Diseases" - Great info in here this morning!

http://paper.li/ravishingrhia/1438808814#!headlines

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.....

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. 

#HAWMC

"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"...

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....