Showing posts with label daily life. Show all posts
Showing posts with label daily life. Show all posts

Sunday, August 6, 2017

The Memories of Life BEFORE Chronic Pain & Illnesse"S", thoughts of simpler times, knowing one should NEVER be "complacent" & not share your feelings, all too often "we" lose out

In The World We Now Live In, All Too Often Many Of Us Remember Times that were Simpler, Many of Us Without Chronic Pain and Suffering, not Fighting to Get Into See Physicians, or Fighting to Get Insurance Companies to Pay the Bills. We also Were Not "Surrounded by A Sea of Specialists" Parents and Kids Never had to Be Concerned Over "kids Abusing Drugs", we could Leave Our Windows Open, Our Doors Unlocked, Those Time When a "Mean World" did not exist. You Could Walk down The Street, You could Drive down The Highway, Kids could Play in Their Yards, We were not a Country, And World filled with Violence, Hatred, Bigotry, None a few years ago would have been a "Suicide Bombers" or 'Home Grown" Terrorists; in fact any type" of Terrorists

 

 

Time were filled with good memories, vacations with families, getting together with the Neighbors, Having a "treat" of a Hamburger and Fries on Paydays. Deer Hunting, Fishing, and Our Minds Filled with The Promise of a Brighter Future... now WE LONG for those times that gas was .50 a gallon, and $10.00 would buy enough groceries for a month. We have such gratefulness and I know for myself, a "Longing" to live in "that World" again...

 

I had been "going over" all kinds of memories, good times. lousy times, and all of the "quickness" of how time goes by. My daughter and I were talking on the phone yesterday. She had taken the boys to get school shoes and clothes. She was saying that of course Logan, the youngest, still has a "school supply" list, yet James, who it just dawned on me, my oldest Grandson is going into JR. HIGH SCHOOL this year. So, of course they wait for many of the supplies because the teachers will want different things. That got me to thinking and remembering what seems like just yesterday, that Amanda and Jimbo brought James up from Corpus, he was only about 6 WEEKS old, born on December 6th, 2005. I had really just moved back to Texas, after being in Seattle for almost 5 years, and only had been back myself for about 2 weeks or so.

 

I got to looking at all of the photo's over the years, how little James was, then Logan, who is almost 5 years younger than James, is also getting much older, growing like a weed, and is now I believe 7 and going into the 2nd grade! Heather my Granddaughter, who was only 2 years old when Amanda and Jimbo began seeing one another, is now been out of high school over a year, and is starting on her 2nd year in college, working, and getting ready to go to nursing school probably next spring. As I thought about my years, my hopes, dreams, possibilities, the things I accomplished, things I wished I had accomplished, and that "list of deals, times, events, and yet dreams" of what we "hope" we get to do, before we are "no longer here" on this "plain" and have stepped into another realm. I've been blessed with the incredible children, grown, never was into loads of trouble, drugs, causing problems, both have the high school diploma's and have some college, certificates and so forth. I had a son in law that is that is the most caring, nurturing, loving, comforting, care taking husband, son and Father I believe I've ever known.

 

 My daughter and him met when she was about 15 years old, and as of today, and what will probably be the rest of their lives, that have a stable, happy, loving home, with three incredible kids, and they are blessed, and I am blessed and a better person for my daughter, son and son in law. When I think about how much I "missed out on" from my personal ideology that I so wanted to accomplish, I began pondering that first of all, when I was in school, and for the most part when my kids were in school, there was NOT a great deal of "meanness" of drugs, of those who choose to terrify other kids... life honestly was much simpler, especially when i was in high school. Yet, the very things I felt I would either "do" etc in my own personal life, much I never accomplished. I wanted to be a nurse, and in the medical profession, from the time I was about 13. I began my "writing" at 14, and felt I would be compelled to be a very accomplished author in the time to come. I wanted to travel much more, even overseas to many of the European countries, yet I've only been out of "the states" once, and that was to Mexico. I never even got the chance to go up to British Columbia when I was in Seattle.

 

It happened that I went shortly after 9/11, and things at the borders had really changed. In fact, I never owned a passport. I've seen many of our states, had many vacation from those with my parents, to those that I took my kids on, to those I've been with someone else, and then even by myself, to Austin TX, to Lancaster CA, to Phoenix AZ, been snow skiing, and have had many great experiences, even though I also "missed out" on many, that for one reason or the other, life turned me a new direction, thus I did something else, other than what I "thought I would".... at 57 years old, and suffering from several chronic and severe illnesses and pain, it makes it more difficult that when I was younger and in better health to jump up and spend a weekend in San Antonio, or go to Dallas dancing, or just for a night out on the town...

 

 I still have "some of those dreams" on a list, I don't really like the term "bucket list"... for some reason that just does not sound correct to me... but I have come to see that life is a challenge and LIFE FLIES BY TOO QUICKLY, you blink and you are in college, and you blink again, and you are over 50... pondering over where the time went, and why you did or didn't do some of the things you did. I've had many people over the years ask me how I "withstand" the illnesses and pain... 

 

well "faith" and "hope" along with what little bit of family I have, along with my "fur babies" keep me trudging forward even when i feel like throwing in the towel. So, tell everyone you love, that you love them, every chance you get, never take one moment for "granted" for the next one may not be there, never pass up an opportunity, if you can, to do something you have always wanted to do, be kind to those around you, be courteous to the elderly, those who are suffering, and even if you don't "give financially" giving FROM THE HEART, and with NO expectations, other than it made you feel good to do something... for coming from the heart and soul, is truly blessing someone else. I sit here today, alone, well Peanut is here, but no other "human" - and I do get lonely, I do at times feel that I've "failed" at marriage more than once. But, in my heart of hearts, i do cherish the "love" I've had, have and maybe someday have again.... Thanks to each and everyone of you, that give me a "lift" when this life seems to "weigh me down".... for you are a true blessing yourself....

Sunday, July 3, 2016

Happy 4th to You and Mine is just "here"....

I hope everyone is having a great, but safe Holiday weekend! Sadly, my daughter and son in law did not get to come up this weekend. Their work schedules were crazy busy last week, and I know they were too exhausted to make this 6 plus or more hour drive up here. So, I do miss them not getting to come up. But, I DID find the color of paint for the cabinets over at the other house I wanted to use on them, so I went and got a quart of it to try. After messing around with Lowe's and really not getting much help, and then Wally World was WORSE! The "woman" had no clue about "paint" and was filling in, and she had been working in Automotive section of the store, so I know one lady was trying to match paint to what she had gotten there before and this girl could not get it matched what so ever... I finally said to heck with it. I went to Sherwin Williams yesterday, got service of exactly what I wanted... I even already had the colors picked out online, and he answered my questions, I had my quart that I could try first with me, and was out the door in a flash. Sometimes you just have to pay the extra, and get with someone who knows what the hell they are doing. Now, for the white enamel, I may go with a lesser expensive paint, and get Wal-marts BUT I noticed really their paint prices are really not much cheaper than Sherman Williams when it comes down to it And Lowe's almost has TOO MUCH to pick from... I did buy some stuff at Lowe's the other day to try on the hardwood floors for cleaning them first, then they will need to have some places probably stained, which I've tried already and it is looking good... then of course that wood is going to soak up wax since it has been not waxed in many many years and has had carpet over it for 20 plus lots more years. 

Mom and Dad carpeted over it in the living room, hall and dining room long years ago and it just made me sick they covered up those floors.. I don't think I am going to completely "redo" them like in this house... it is extremely time consuming, and then to really seal them with the Polyurethane in this heat right now.... would probably make you sick to smell between completely redoing them and then sealing them. I am going to put area rugs down like I did in here anyway, or that is what the plan is. So, there won't be a great deal of wood showing as far as in the middle of the rooms. I already filled in one spot, where long years ago, Dad had termites. He has repaired one of the spots, but this one may not have happened until after they got into it before. Anyway, it looks fine, and I put a bit of stain on it, so by the time that is waxed, I think it will be okay. Again between furniture and area rugs, it probably won't be seen that much anyway. But, the "carpet" they laid in the dining room and kitchen is GLUED down like what you see in doctors offices and office buildings. 

So, I don't see being able to save that floor, only changing that ugly mess they have in there. Which I think going with some type of linoleum maybe that kind of looks like wood, or something that is much lighter in color, and that is not so dark. I noticed just me beginning to paint in the kitchen already has made it "brighter" in there and not so dark. Mom got to where she never opened blinds, and it seemed she stayed in the dark all the time. It drove me nuts.... I finally began going over there at the last and opening up blinds and doors when the weather was cooler, just to "feel" like you were not standing in some dark spot.... But, there are lots of older homes that have that "darkness" to them... I know my Grandmother's neighbor (I always was scared of the woman LOL) her house was like a tomb, it was so dark when we went over there. I thought she was some kind of "witch" or something... I think she really did not like kids... but there was just something about that house that always seemed creepy when we went over there. Now I have something going on with my Oleanders. They have been growing and blooming, and now all of a sudden either something is "eating" on them. or there is something like a fungus on them from all the rain we had back weeks ago or something. I've got to look it up, because they are losing their leaves, and the "beans" that appear before they bloom, almost look like something is eating on them... it is just strange.... anyway, as you can tell not much going on here.... just still working on this house and the other one, and trying to get things done.... one foot in front of the other.... Rhia

Monday, September 7, 2015

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....

Tuesday, June 23, 2015

Chronically ill, chronic pain, and how LIFE can just be absolutely almost unbearable when you feel too bad to deal with it!

I don't care what anyone says, EVERYONE has those moments, days, weeks, and so forth... that things just DO NOT go RIGHT! Yet, when you are dealing with all too often Chronic Illness and Chronic Pain, some of life's bull, can be totally the reason some people just totally "lose it".... I know we wonder when someone "hurt's themselves", or they may just "go off the deep end" and rant and rave about something, or they "take off" for the day, or for a couple of days... or any number of things that we do to try and keep from going completely BONKERS, in life, in illness, and in pain... then add in the STRESS that complicates everything it seems, and it is a wonder that ALL of us are not in the "nut house"... thus this is one reason that I "rant and rave" in my blog and in my writing... some days you just have to PURGE all of that "ugly mess" out of your mind and heart. Everyone has their own ways... mine is to "write it" "say it" and then I am "free" what those "ties" of stress that bind...


AM SO BURNING MAD I could just about SCREAM to the MOON and Back!!! After THREE times of trying to get order for blood work over to my PCP from my Rheumatologist, I go this morning to have other blood work done for my PCP, and they tell me "they do not have the Rheumatologist's orders for the blood work!!!" SO, I go outside, call their office and gave the the fax number. They were going to fax it right then. I go in and for the 1st time he gets my blood the FIRST stick!!! BUT, they claim they still don't have the Rheumatologist orders. So, we get my Mom's done, and get my other finished and still they continue to tell me they didn't get it. So. NOW I've had to email my Rheumatologist again, and I KNOW they faxed that paperwork. My PCP and those girls in the office are idiots. It's probably been laying on someone's desk there now for a week!!!! So, NOW I have to make another trip, and no telling how my veins will act. One time they do great, the next they suck. I am supposed to go have the discography done Friday! So, I don't want all of my veins bruised too badly, then they have hell starting an IV!!! So, right now I am ready to blow more than one gasket. Then EARLY this morning, I get an email from "a person" that made me so mad I called them even though it was 2 HOURS earlier than me... so about 5 AM "they" get my call. After chewing "them" out via email, I was so HURT and felt so damned betrayed, after putting my heart, mind, body and soul, in a relationship for 13 years, and I GET BLAMED for it not "working"... I CAN'T fathom how someone who freaking did things that HURT ME, can so easily FORGET, ALL THEY DID OVER THE DAMNED YEARS... but I am THE ONE TO BLAME... OMG, I am so tired of being walked on and wiped on like a damned doormat... LIFE is NOT easy! PEOPLE disagree... that is PART OF A RELATIONSHIP... NOTHING goes COMPLETELY SMOOTHLY... not when illness, accidents, family... everything can't be PERFECT, but apparently, someone thinks YOU NEVER ARGUE, YOU NEVER HURT someone's feelings, that it is some FAIRY TALE!!! Lord why the hell I ever even tried I don't know... you would THINK I SHOULD HAVE LEARNED MY LESSON!!! But, I WILL NOT BE USED FOR A damned door mat anymore.


and continued....

PLUS I completely changed my entire bedroom around yesterday. I am "parying for it today" though... my lower back and hips are on fire they hurt so badly... then the blood work was "fasting", so Mom and I both went... so I had not eaten or had anything but water since last night... and then Mom has such a terrible hip problem, I finally got her to buy a cane today. She can't put any weight on that hip. I am calling my Orthopedic Surgeon who did my shoulder and neck and getting her an appointment. There is NOT ONE Ortho doctor in our town or any closer that takes our insurance anymore... so she has to go to Dallas anyway, she might as well see the best.... I fear if an injection does not work, she maybe facing hip surgery.... we may both be down with surgery by the same doctor ... if things don't get better... So, she wanted to go to Wally World and I took her. I needed some really very heavy plastic... I am trying to get the place fixed where my dogs are paper trained. My house is not as level anymore, it always moves around, that is TX soil for you. This house was built in 1950 and it STILL SETTLES, depending on the weather, and time of year. One day you can't open a door, the next it won't stay closed... it sucks... so I took her out there, and I knew her hip is bad by the way she was walking, and when she said she would buy a cane, I really knew it was bad.... so I am home, had to take my meds, give the dogs their meds, I still have not eaten, and am trying to get my "orders" for that damned blood work to me, so I can get them done. They won't pay for the Xeljanz (insurance) until I have the blood work done.. so between crappy weather, and a crappy life mess at the moment, and now hurting like hell, I am ready to just throw in the towel, wash cloth, kitchen sink, and the baby's bathtub with the water.... out the danged front door and say to hell with it all! LIFE SUCKS and PAIN SUCKS WORSE!!!!

Wednesday, January 21, 2015

"Learning" - New Words for Today - and My thoughts about a Certain Quote I stumbled upon...

Okay, time to learn words for the day! 

1)  decumbiture

The time at which a sick person takes to his bed, or during which he is confined to it by disease.

In astrology, the figure of the heavens erected for the time of a person's first taking to his bed from illness. Prognostics of recovery or death were derived from this figure.

The word 'decumbiture' comes from a Latin word meaning 'to lie down'.


2)  libertine
MEANING:
noun: A person who is morally unrestrained.
adjective: Unrestrained by conventions or morality.

ETYMOLOGY:
From Latin libertinus (freedman), from liber (free). Ultimately from the Indo-European root leudh- (to mount up or grow), which also gave us liberty, livery, and deliver. Earliest documented use: 1384.

A THOUGHT FOR TODAY:
In those parts of the world where learning and science has prevailed, miracles have ceased; but in those parts of it as are barbarous and ignorant, miracles are still in vogue. -Ethan Allen, revolutionary (21 Jan 1738-1789)

and now my own "thoughts" about the Thought for Today....

I find the "Thought for the Day" quite interesting. Being that it came from the 1700's, and at the time of course we were not "barbaric" at all, but we also were not out of the woods as far as having a good grip on large corporations, large manufacturing, or items that would make us appear to be very far on the other side of science and learning. We have always been a great deal ahead in some countries as far as our "learning curves" compared to places such as some places in Africa, or down in South America. Yet, look at "Stonehenge" and the "Inca's" and the "housing" or tiers that they "built" or the pyramids... all of those things were designed by "a learned and scientific" society. I believe that those people that built Stonehenge, or the Inca's, and many other people like the Egyptians believed in miracles, yet they also had knowledge behind them also. So, it just seemed very interesting even in the early 1700's that Ethan Allen saw that those who are more attuned into "miraculous" happenings seemed to be less "educated" than some. I guess there are two sides to the coin when it comes to scientific beliefs, knowledge, and the other side of the coin, believing more in a miracle than in it being based with some kind of real explanation. What may seem a miracle to some, can often be explained away as it being a specific answer, rather than it being spiritual or something that happens where knowledge nor science can explain it. Yet, when you look up at the heavens, can "science and knowledge" truly "explain" all that we see and know up there? Some would certainly agree that "all" things can be given explanation to, and not be done like a magical force. Yet, I think as our constant, every changing world is today, more and more even those with the most knowledge can see that some things that happen just cannot have a concrete reasoning behind them. Thus, there are other forces at work in our world that cannot be seen, touched, or felt. But, are here, and logic must fly out the window... I am sure I am not making much sense at this moment, even though I know what I am trying to say... even in the entire jurisdiction of the medical world, there are items that are just not explainable by modern medicine. We see this with physicians and in our medical domain all the time. Doctors at times admit they may not truly have a plausible "why" or "why not".

When you start to delve into our issues with chronic illnesses, chronic pain, and how many things we still have to school ourselves on, it is an endless and boundless "land" on which we stand. Even as many researchers, teams, advocates, non-profits, doctors, students, and schooling as we have to offer up the best explanations as to why some of us, especially female in gender, fall into the role of living with "autoimmune illnesses". I've often wondered "why" it is more of a "female" set of disorders, syndromes and illnesses, that do not effect the male population nearly as it does our women.
I've also pondered upon the reasons as to why my life's journey didn't take me further into the places of medicine. The medical field has been a fascination of mine since I was about 12 or 13 years old. I've told the tale often about living next door and growing up with a neighbor who was a nurse for our hospital forever and a day as it seemed. Our next door neighbor was the very BEST NURSE in her time on this planet. She is almost a "lost" soul now. I am NOT knocking nurses at all. There are many out there that do the job, BECAUSE THEY CARE! But, much like Teachers these days, between the worry of red tape paperwork, the number of horrid illnesses out there they must be so careful about, and now things even worse due to diseases out there we have no "medications" for... antibiotic resistant infections, like Ebola, and even forms of TB, Pneumonia, and others. It is a frightening era in nursing and the medical field for those that deal one on one with patients, body fluids, and everything that they could have just a tiny "mishap" and be one of those in the hospital, rather than working there.

Yet, this lady took me under her wing. She was a 2nd Mom to me all my life, from about the time I was 6 or 7, until I graduated and married at 17, she had me so engrossed in the passions of medicine and nursing that I had plans for many years to do just that. I wanted to go to school to be a nurse. This woman (I will call her Dee Ann) had 2 sons, and then decided to go to nursing school. At the time being an LVN was a good position. RN's of course were more of the "leaders" and supervisors, but being an LVN appealed to me because when I was old enough to become a "Candy Striper" I got "hands on" experience of watching babies be born, "autoclaving and sterilizing instruments", watching surgeries, caring for the newborns, and even making Christmas "stockings" that babies born on Christmas Day got to go home in a "stocking" Dee Ann and I made. She taught me how to sew, how to crochet, how to do just about everything at the hospital that she did. At the time, I was probably the only girl racking up hours and many hours at that as an "aide"... more like an advocate, or volunteer. But, I would spend my entire Summer Days 8 hours or more if they let me right beside Dee Ann, learning everything there was to becoming the very best nurse possible. There were no "disposable" instruments. Everything was sterilized, washed, and then packed in certain ways depending on what those instruments were for (an in what type of surgery and so forth), then wrapped in special wrapping and put into a very large "vat-like" autoclave. They were then in there, and steamed for a certain amount of time to completely finish the sterilizing process. Then they were labeled by date and what type of pack it was. I got to change diapers, take the newborns to their Mom's, hold them, feed them, watch them be born, and even would watch through the window of the Operating Room when they were performing surgery. Those were some of the best years of my younger life.
Why I had the notion to decide and marry so young, I don't know. Love is love... but hind sight is 20-20 as they say. I still at the age of almost 55 years old, "kick myself in the butt" at times wondering why I didn't go ahead to nursing school. Even married, I could have went. Then when I was working in the business office at a hospital for 6 years, again I had the opportunity to go to nursing school all paid for, and I passed the test and could have went. But, I had two kids in school at the time, and being away from a full time job for 2 years to go to school full time, was a bit of a daunting situation for me. Even my 2nd marriage was full of ups and downs, in the later years more downs than ups. I felt I had to "support" my kids and home first, thus I decided NOT to go to nursing school. Even after passing the test number 1 at the college there, and was a front runner, I declined. It was one of the most difficult decisions I ever made in my life. I did go to college at night for several years, completely a degree in accounting. Yet, accounting was just not in my mind as the passion I felt for the medical field.
And it still holds true today. If things were different, and I was not chronically ill, and now a bit OLD to decide to go off to college and become a nurse, I would go in a heart beat.

Alas, life takes us on many journey's. Often we may not understand the reasons why until later in our lives. Then there are times we never quite figure out why or why not in what we consider this daily walk of the "game of life"... all too often now it seems it is a game all right, but I feel as if I am on the losing team.

I can "see" the many "curves" in my river of flooded waters and then at times, just a trickle of water over the rocky bottoms of my life. I can blame it on love, on family, on Dad NOT pushing me enough, on the "time" in life when most women didn't think about college, and then on seeing that now I am chronically ill and probably would not be able to be the nurse I would want to be.

Any and all of the excuses in the Universe have never allowed me not to feel a bit bitter about not fulfilling that dream of destiny I had for myself and for the many I feel I could have helped.

I realize now, more than ever, I can "fulfill" a portion of that dream. All of my wide array of medical knowledge, and the years I've put in, along with what I have done to "self educate" and learn about my own illnesses has given me a light to the path of advocacy, of activism, and to help other through my own journey. I've been able to do some things that I helped to kind of fulfill a portion of that dream of "helping others".

As I ponder over all the things that flow and swirl around in my brain, I still live with the idea that many times I've put off something, thinking, well I still have time... to do this, that or the other... or things will be different or better... yet life is very short... as young people we so often can't see that... and as our years pass by so swiftly, we begin to live with "regrets" of why or why not, of how we did or did not, of all the things in life we now know are "missed opportunities". Of course I don't and will never "regret" the wonderful times in my life, and the things I have been able to do, accomplish and say that I did, like publish two books, and hopefully a 3rd this year... but still as mere humans there are so many things we "miss the boat" on... and when you become chronically ill, or arrive at this crossroads in your life where you can recall those times, it can be a mixture of happiness and also sadness for what you "might have" accomplished... never take a moment for granted... they all fly by so quickly.....





Sunday, September 28, 2014

Talk About News to Make You Shout! You must read this and be sure to go to all of the links!!!!


I was so blown over by this announcement from the Lupus Research Foundation I had to rub my eyes, blink and look again to make sure I saw what I saw Correctly!!! This is such phenomenal news I was just taken aback.

And further not only do we owe the NIH hats off to this incredible research opportunity, but everyone below along with all of the researchers individually, those folks that are on board for activism, Ambassadorship, Volunteers... everyone who tries their very best to stand up and say that what we have now as far as help for these illnesses are simply NOT acceptable, as the Arthritis Foundation puts it. Hats off to all that have been and will go back to the "Hill" in D.C. to open up and tell their stories, or the stories of those loved ones hit by the horrific illnesses. People like myself that try their best to live a "normal" life when there is never any sense of "normal" when you have a chronic illness/pain and especially when it comes to an autoimmune type of illness. I am so thrilled to put this on my blog and share it with my readers!!!! Be sure you go to ALL of the links and see what is being said about this incredible Undertaking... the FIRST EVER of ITS KIND to do something to stomp Lupus and RA, along with many other AI Illnesses into the ground.... Again I am just totally almost speechless.

AMP Rheumatoid Arthritis and Lupus:

The partners

http://www.arthritis.org/
Government

  • NIH
Industry

  • AbbVie
  • Bristol-Myers Squibb
  • Merck
  • Pfizer
  • Sanofi
  • Takeda
Non-Profit Organizations

  • Arthritis Foundation
  • Foundation for the NIH
  • Lupus Foundation of America
  • Lupus Research Institute/Alliance for Lupus Research
  • Rheumatology Research Foundation


http://www.niams.nih.gov/News_and_Events/Press_Releases/2014/9_24.asp

 

 

 

http://www.rheumatology.org/ 

 

 

I will be posting more about this tomorrow and also more "Kudo's" to everyone participating om this historic event for RA and Lupus!!!

Two Days of Insanity....

As just about anyone knows who follows my Facebook and blog site, you know about the accident that happened on March 26th 2014, to my husband Jim. Most of you knew I was in Washington D.C. at the time with the Arthritic Foundation, for the Annual Summit on Capitol Hill. It was my very first time to be in DC, as well as my first time to get the opportunity to voice my own personal struggles, along with all of our struggles, involving autoimmune illness, medications, lack of doctors, especially Pediatric Rheumatologists, and so forth. There has not been nearly enough done about these illnesses, ranging from not enough doctors, not enough research, not enough knowledge to those who have the illnesses or know someone that does, whether family, caretaker, friend and so on.

I felt my voice there and since then has been integral in helping to move forward and fight against illnesses such as RA, Lupus, Sjogren's, MS, FM, CFS, and the gamut of Autoimmune illnesses that we do not even realize exist. A new factor for me this year had been that I have "pernicious anemia", which is an autoimmune illness. Rather than being "anemic" my body does not absorb enough out of my food, and keep it going in my body as it should, thus I take B-12 supplements, which by the way, it is the B-12 it effects as far as the autoimmune part of this. Of course I am on a HUGE daily dose of Folic Acid" which is B-6, due to one of the medications I take. It depletes the body's Folic Acid, so I must supplement it daily with about 400 Times the amount a normal person would need. I found out that much of my horrible sores, thrush, and mouth ulcers were caused from a lack of Folic Acid. Once I began using it daily, at a high dose (it is water soluble so you can't get "too much") my mouth is not nearly as bad about having all types of sores, ulcers, sore throats, thrush and so on as I had before.

I had not given much thought that due to the "nature" of what all has transpired that I would not be able to "voice" the everyday thoughts I feel surrounding what all happened, has happened, and what may or may not happen over the next year. In a way, that makes me very sad. The very one outlet I have to things in life, from illness, to children, to Mom, marriage, and my own frustrations with illness, I always knew I could come here and "talk" about what was happening and not at the time had to "censor" what I spoke about when it came to life. Yet, now I feel this heavy burden, although never was my fault, and I never gave any idea to it, I am may not speak about all of what is happening as the time over the next few months go by, So, if I avoid that subject it is certainly not because it is forgotten, or it is not still a huge everyday part of my life, but because life is as it is, I have to "alter" my own voice, as far as my posts, and not speak, unless it is in a very general sense of what happened. Most everyone that comes to my blog, for the most part are people that are close to me, enough that they already know the ongoing saga from March 26th, 2014. So, there is really not a "need" for me to tell others, but more of a need for me to be able to "release" my ongoing revelations about that being what it seems life as it is right now evolves around. You tend to get up when the "rooster" crows with the thoughts of it spewing out of your brain, and then all day long it seems every thing, every where, all that you do is a reminder of the nightmare of having something so horrible happen in your life. Each time I close my eyes, that is a last thought, and each morning I awake with it as a first thought, and all through the days you tend to live out in thought of it. Then while you sleep the PTSD hits, and it can also happen during waking hours. All of you who have Post Traumatic Stress Disorder know exactly what I mean... you spend your days trying to knock it off your shoulders and in the night, you try to take it out of your dreams, so you can at least have some peace during your sleep. Good Luck. Many people and I have even had the thoughts that "things" would be better as time goes by. Memories fade, time helps to heal the damage physically, mentally and emotionally. I can tell you that this... time has NOT erased, nor has it made it any better. If anything, each passing day the building up of being totally in damnation by all that is occurring around you, only grows larger, nothing fades. From the very 1st phone call, till the last piece of daily mail, to the questions, and I mean just daily questions, how are you, how are you getting by, how are things??? Questions, that sometimes I wished I could just say things SUCK! Things are worse, no better... life has lost its luster filled wonder, my dismay of voice, of writing, of being so caught up in something that I did NOT even have anything to do with, is running rampantly through my life and through my very veins, like the blood my heart pumps with every beat. You DON'T heal, not that quickly... you DON'T stop feeling guilty over something YOU DID NOT DO! You don't find a quick fix... there is none... so I plunge myself into trying to write, I plunge myself when I feel like it, trying to throw out all of the stuff in this house that are reminders of what life used to be like. I DON'T want to even remember a "good" or bad moment... I don't want to have to fear the past, present, or the future. I am sick and tired, of hearing, feeling, and being sick and tired. I am sick of bitching, griping, moaning, groaning and crying. I am sick of listening to others try to tell me it will work out, it will get better, because right now nothing seems better, everything seems out of sorts, out of whack, and I have lost all patience with those who think they can "fix" it for me. There is NO FIXING what is permanently broken.
My mouth and teeth for example. Let's get on that band wagon and have a talk about those. Of course not one dentist could fully assure me that my mouth would be better when all of my teeth that Sjögren's destroyed, when pulled out and dentures put in would be 100% better. I knew that. I am far from a moron, or from a dreamer. My "dreamer" stage left me a long time ago, after my job, and my life almost fell apart in Seattle. He threw enough sand in my eyes, and did enough damage to my heart, that I no longer am the "dreamer" I had been. I truly feel that is why the poetry I used to be able to write, sometimes 7 or 8 daily, don't come anymore. When Steve, did what he did, after bringing me over 3,000 miles away from my "home" and family, with promises that I would have a wonderful life in Seattle, to only shoot all of those good feelings down within a year or a little over after me getting settled in, with his cheating, lying deceitfulness... dreaming ... as far as being a dreamer, left. That is when a "new voice" emerged and my writing became totally different. It will never be as it was when I was that creature of wonderment, of discovery, of believing people truly cared.... he literally took his hand, reached in and pulled all of that from my heart, and threw it into the Sound at Seattle... for there is where all of those wonderment of feeling lie... in the Sound of Seattle... I can still at times feel the winds blowing across as I looked at the beautiful city, when I walked daily on Alki, loving each day there, and breathing new life, wanting and knowing a new glory would emerge.


I don't want to sound like I am that unhappy being here around my Mom, kids, and Grand Kids... and I am not putting down our lives, or feel "cheated" in some way as far as why we are here, and why we will probably continue to be right here, probably in the same house till Gabriel's horns blow. Yet, "cheated" from living life as I felt we would I can say is a terrible disappointment. Kind of like FINALLY after years and years... of not being able to say I was a "published author".... I got that opportunity... not only once but TWICE I can say I have two published books, and even have a "check" from the seller for two of them that actually sold! I am so tickled about it, I am not going to "cash" it, but frame it and put it on my wall by my computer and desk. Even though it is a mere little over 6.00, it still means that it is priceless to me. It gave me a tiny glimmer of "normal" and that a minute bit of my "hope" and Faith could actually coming back to me. Which is far from where I've been in the past 8 months or so. I had given up on normal forever, and as far as the glimmer of hope and faith; believe me it has been fading fast in the background of all that has taken place since 2005 and actually a bit before then.

As I had titled this post "Two Days of Insanity"... there were reasons for the title. I thought about "re-titling" the post, but whatever it is "called" will not change the meaning of the post in itself. I have been trying to squeeze in lots of my own personal advocacy and activist work, over the months, but between being gone to so many different appointments, taking care of all that needs to be done here at home daily. from taking out the trash to running to the market, it seems my time either is gone, or the energy that I did have in my "spoons" for the day are used up.

That should "stick" with me more than it does. When others ask me how I am doing, feeling, whether they mean illness wise, emotional wise, from autoimmune illnesses, to his issues with spinal cord injury, I really should say well I began this day with 8 spoons, getting showered and dressed took at least 2, maybe 3. By the time I had coupons ready, a list done, and ads matched up there flew out at least one at the very, very least. THEN I am looking at having at the most 5 spoons left. Well, by the time I run errands, get through the market, which here seems to be a nightmare any day of the week, or have to go and do something at Mom's,or it is laundry day, or I have to find and fix something for dinner, if I had already used up the left overs.... so I can contest, by then there are OVER 5 spoons used up, and my day is not over yet. 

I still have dishes to do, right now we are fighting "sugar ants", which I was raised here in TX, so here we called them "piss ants". Don't ask me why, but I always gathered it was because they were so extremely tiny... they will sniff out one crumb, and within an hour invade an entire bowl of dog food, if you are not watching. I decided to try something "harmless" to the dogs... so I read putting back soda around their bowls would stop the ants. They won't go into the baking soda. So, guess what? Both dog food bowls have baking soda surrounding them. Knowing my "Chi_Weenie".

Then I also read ants hate tea bags, like after you brew your tea, let the bag air dry and put it in the corner of a shelf where you have stuff it won't hurt and where you have seen ants. Hell I even bought the "good" any bait traps, and I am still finding ants in stupid places. I guess they are either hungry or thirsty. But, dammit I am sick of trying to keep from spraying Raid and getting the heck rid of them. Even though about a week ago, I bought "Raid" for ants mainly with a get this "Lemon scent". I hope the hell someone does not think it is furniture polish!!! And I sprayed it on a rag, and wiped down the splash boards window sills, everywhere and everything I could without getting it around food or anything else. And even after doing that, wiping, vacuuming, and spraying where I could. Plus I leave nothing "open". Anything from chips to bread, goes in the fridge. If it is something that possibly will attract an ant it goes in plastic or glass containers with lids on them. So, that the hellish little devils you would think would move on. I am NOT a fan of any kind of "bug".... from a spider, mosquito, I don't care what it is, if it is "creature" of any kind, it does NOT belong in my house. So, I am a real stickler for spraying the yard, all around the outside perimeter of the house, and then I keep the roach baits and ant baits out and update those about every 6 months. The ONE thing I cannot get rid of and that I despise so badly is those little freaky looking "newt" lizard looking things. They just make my skin crawl. Oddly enough all my life here in TX, before I went to Seattle in October of 2001, I had NEVER seen a "newt" or whatever at any of my homes... never... no kind of lizard thing. I had a mouse once, and actually had a possum climb up our pipe that came into the house to the water heater... and she actually took her scared butt down, got by the steps of our front porch and stayed there for weeks with babies clinging to her. It was weird. But no damned things like that. So, the first time I saw one in our home we live in now, I had no clue what the heck it was. Weird almost a pink iridecent looking thing that ran fast, looked like some kind of strange lizard, and I was hell bent to rid my house of those little bastards (excuse my French)... so here I go online to find out what to do to get rid of the damned things. We had gotten just about rid of the few mice in the attic, at the time they put that insulation down that is kind of like shredded looking newspaper. Other than that an occasional water bug, which won't last long here. or a spider that I also despise, thus I just knew I would find something to rid my house of those things. They certainly were not the cute little "GEIGO" Gecko... and even if they were I don't want them in my house....

Well, guess what ladies and gents! It is almost impossible to get rid of them. Undoubtably they are not effected by bug sprays, roach baits, spraying the outside all the way around the house, including the porches, and those damned things are just not subject to any of the poisons or baits. Well, I figured out they "hide" in the grooves of the siding and the frames of the windows and doors. They also hide behind out two front porch lights. Plus I would bet they are in the insulation of our walls. So, everything I read said leave them alone, they eat bugs and are harmless. They maybe harmless but they sure as hell don't look or move as if they harmless. They creep me out just about more than anything other than a snake.

Anyway, how I ever got off on that tangent I am not sure other than the one thing that came to mind, is one of our "storm windows" on the  kitchen window has just "popped loose" and was hanging there by a couple of screws. I almost fainted! If that sucker falls out and breaks we are in deep crap. They are not cheap, and we still need to buy all the ones that go over the windows in our music room. There are I believe there are 5 of those at about $80.00 plus a piece, because they are made to specifically fit the windows. We were going to get the man who put up all of the rest of them to get us those for a bit cheaper rate, and then he would put them up  ... of course something else always comes up thus we did not have the money or time now and again to finish them.. and they need to be done... those old windows back there do not even have any of the push pins and the stuff you put around the windows to seal the glass in.... the glaze is just about out of all of them, then we had hail knock a hole in one while Jim was in the hospital, so I have it all put together with cardboard and lots of duct tape... 9,999 uses for duct tape, a wire coat hanger, and WD-40!  

More later.... got to get dressed to take my Mom to shop...

Sunday, February 9, 2014

Feeling As If I am A "Deer" in the "Headlights" - Autoimmune Life

The Shadows and Inner Glow of An Autoimmune Life



For days now, I've again been struggling. Struggling in my own mindset. Struggling into between those shades and shadows, where there truly is no "black", nor white.... only shades and hues a what is a gray tone in a life that I so felt like had returned to colors.

Several months back, even just a couple of weeks back, I had found what thought was my precious "voice" again. Not the one that blabs at my Mom, nor fusses at my puppies, or rants and raves over stupid people, stupid insurance companies, and all of the wrapped red tangled web of a life called AutoImmune.... Life... that it maybe. I felt that just maybe I had unraveled some of that tangled, mangled ideology from my own soul, notice I think I still have one of those, yet sometimes it surely evades me. I was running in and out of the shadows, seeking where I felt I had found what I had been searching for now for more than a year. I can't really give you a "look" into the looking glass of those panes that I so seek, but when I find them, you too shall know it.

For then is when the words of wisdom just flow onto the screen. I type them, not even thinking about what the next word might be, not ever thinking will this sentence sound off, or will the audience that reads this "get it". None of those empty spaces even enter my somewhat empty head. Because, from my heart comes the words that are pure gold. That gold that the very streets of heaven are paved in. Yes, I do believe that the streets of heaven are paved with the purest of gold. I don't talk much about what most call "religion" or religious "beliefs". I have found just as many say, you never discuss religion or politics, hell not even on the internet, lest you want to cause the fight of your life, run your blood pressure sky high, and still be not able to have anyone "see it your way".... kind of like the humor in the fast food restaurants burger in the drive thru.. "Oh, yes you can have it "your" way"... well you may be able to have it your way... but I often wonder when you ask for yours to be unique or different, to be the "troublemaker" in the long line, what happens to that burger as they are preparing it for "your way"? Scary enough to wonder what they do with any of the food during the course of a day, much less when I am that troublemaker. I have to have "MY english muffin" without cheese and just the sausage. And yes I want strawberry jam. I sometimes wonder if they don't scrape that cheese off on the bottom of their shoe, wash it down, and throw the sausage down on it, then put it on the griddle quickly to "dry it off"!!! I have to laugh, because of the horror stories all of us have heard about where people get upset with the boss, or want to be a smart ass in Jack in the Crack, or CracDonald's as we like to call them, and do some thing hideous to the food. It happens. I just pray it is not going on where I stop and get my food from.

So, raising cane with anyone in the political or religious walk of life, is like stepping into a burning bunch of coals. I believe every one of us have a tad bit different view on both subjects. Thus I try to avoid the discussion of either as much as possible.

I have learned that the "loudest barking dog" gets noticed more. Or the person that puts their face, their name, and their own accomplishments especially those that one feels are true talents out on the internet for billions to see, may just be fortunate enough to be SEEN!!! It has SO worked for me lately. I have gotten into the "right click" (I hate that word "click"). It gives me connotations of the cheerleaders all standing around the lockers in high school making fun of all of us "homely girls". So, even though click may fit, still not in that stand point. Certainly not a bunch of snot nosed, immature, girly girls, with their short skirts and the large "pom-poms" (interpret that one as you see fit)... but more like this entire group of women and some men also, that have been brought together in a commonality of making illnesses that are still not getting enough "attention" out there for MORE research, MORE educations, EARLIER detection, when means a greatest chance of LESS damage to the entire body.... surely the JOINTS for one!

I've been dealing with once again a "loop" .... caught between the "doctor" and what he KNOWS IS BEST FOR ME! What the people down in their "pre-determination" of insurance should be trying to get straightened out, not take "no" for an answer, call the patient and tell them, you will owe 3,000.00. Your "insurance " said, you will "owe a co-pay" on the medication? This is crap!!!! If they would even bother to wake up they should know I DO NOT pay a "co-pay" or might I say "co-insurance" on an outpatient treatment. I DO pay I guess what you would call a "co-pay" which is $100.00 for an outpatient procedure that does NOT involve surgery, MRI, CT scan or a nuclear test. It   is very plain and simple as they nose on their faces. They cannot give me this line that they don't know... bull, I am NOT the only patient with the Humana plan I have. There are MANY patients on a Medicare Advantage Plan like Humana, and they know for the most part what benefits are before they even bother to call. What the DO NOT do, is get their "diagnosis" coding, and proper wording from the doctor done, THEN call. So, when they do not have the proper "type of procedure" coding for an "infusion in an infusion only setting, for medication that is a "biologic" that I CANNOT administer to myself. So, since they don't have their own paperwork in order, my insurance tells them I owe of course, as I said my $100.00 co-pay. But, due to the nature of how the "infusion" medication has to be coded, Humana comes back with well the patient will owe 20% for the MEDICATION! NO, I do NOT pay separate for a medication I cannot administer myself. It is NOT a Part D drug!!! It must be given in an infusion center, through an IV process. I surely am not going home with an "IV kit", a bag of lactate ringers (or whatever they use now), an IV pole, a bag of Rituxan, and am going to put the IV in and give myself the medication over a 5 hour period!!! In the first place that is about the stupidest thing I've ever heard of. In the 2nd place why are people that have NO CLUE what these medications are, what their use is, how they must be given... why are none of them educated???
You can believe when I was a "Patient rep" at the hospital for 6 years, I better "know" my stuff. Including what certain medications were for, how they were given, and what things meant as a whole for a patient whether surgical, illness, ER... of course I was not a nurse, BUT I was expected to be "educated" on much of the terminology and how some procedures were handled.

If that is not bad enough it is almost unbelievable what I have gone through this past three days just trying to get our local Wal-Greens pharmacy to "fax" my Enbrel Sure Click script over the the "Right Source Speciality Pharmacy".... I have been on the phone with this pharmacist at LEAST 7 times...
What part of "Fax" the script over does he not understand!??? I had called the Right Source, asked them exactly what they needed. They told me to have this pharmacy just fax over that script, that the "prior" authorization was probably already in the "Humana" system, thus they can get that and they can fill the script and mail it to me... for some reason, one that baffles the hell out of me, this idiot here at WG KEPT trying to run it THROUGH WAL-GREENS!!! Each time it denied it! And I kept seeing emails coming in and for my own sanity, I was just about ready to jerk his head off his neck through the phone, when I CALLED for the 8th TIME today! Thank goodness one of the girls answered the phone, took down the information and said she would make sure it got handled tomorrow. The only ridiculous thing she said was that it was "against the law" for them to "fax" a script over???? BULL!!! I've had them had to "fax" scripts over to other pharmacies when maybe one does not have the medication, so they "fax" it to one that does... or maybe it is cheaper and/or so forth... and there was never a problem... hell most of the scripts they get now are either "faxed" OR send via the computer, from the doctors???? Anyway, the phone rang about 15 minutes later, it was guess who??? I would NOT answer it, because if it was him, it was NOT going to be pleasant, not for him at least... so my husband answered it... "he" told my husband he had "faxed" it at 5:06 yesterday afternoon... well why did you try at 4:56pm try to put it through WG again!????? He waited until they were closed there, then faxed it... again it is delayed due to stupidity!!! What is worse, this man is supposed to be a PHARMACIST!!??? If he cannot understand the simplicity of "fax a script" how they heck will we trust scripts to be right????? Frightening thought at the least.....

Well, I am saying... this is an end to this post... I am a BIT CONCERNED that all of a sudden all my new traffic I was having suddenly just took a nose dive.... within a few days... anyone know possibly why???? Maybe not enough of my "own posts" and more about other stuff???? I have no clue, but it does concern me...

I am actually working on my book. I have about the first 10 paragraphs that I began on it late in the evening yesterday. But, this freaking bad headache from hell is giving me the blues... it is truly messing with my eyes ... and just reeking havoc with my vision... but at least I HAVE BEGUN!!!

I have NOT announced the name of it yet, BUT I am seriously thinking about putting the name out... I shall give it some thought... My fear at first was someone would try to "steal it" from me... but, I really don't think so...

Rhia

One morning early a couple of years ago, when we were heading for OK for the day to take Mom to the Casino!

Tuesday, January 14, 2014

"Unwell" ... and if you stay long enough, you shall find and see a very different side of me...




....Right Now I know I am a bit IMPAIRED....


cont. from FB post.


...    for me it is worth mentioning. I became a HUGE" Matchbox 20 “  fan when I was living in Seattle. I had bought their first two CD’s(and yes then CD’s were still a huge market) LOL! Both of them really had some songs on their that “not only touched me back then” BUT it was as if every word they had written, sang, and played music to spoke to this very inner core of my being. I recall walking on Alki (West Seattle looking over the Sound back to the City) Beach, and I played those two CD’s and could walk for hours. There is something un EVERY song, that Rod Thomas sings that just expresses (even now and especially back then) in which sounded like many of my poems and short prose. My live at that time was such an incredibly  wondrous, almost esoteric tempo to it, thus something about most of those lyrics, just reached out and “grabbed” me. Anyone that is a Matchbox Twenty fan, knows the song, “Unwell”. It seemed to be the “theme” of my life at that time! Now, I’m not saying “illness” as far as being physically sick, I really was not “mentally” or “emotionally” challenged either. Yet, for some of those looking outside to within me, may have thought to themselves, she seems a little “Unwell”! The fact was those years in Seattle, especially the last three, were the years that taught me SO MUCH in regards to my strength in all ways, my courage to venture out, to a HUGE city, thousands of miles from any family, or anyone I really “knew” that well; in more ways than I can count, I felt each day, I was “Less” “UNWELL”. Not only all of the above, but I rented my own apartment all by myself (may sound silly to some but for me it was a first; I bought my “own” first “very good” used Honda & knew without any help I could pay my car payment, living expenses, and so on all by myself. I “gained” an independence in my those years more than any other in a lifetime! I interviewed all through the downtown part of the city (LOL! anyone who knows Seattle, knows it has some HUGE hills to go up and down in with very busy city traffic), and in fact had taken two previous jobs I had loved being an apartment manager at both! This new one was at a banking institute and at that time it was MEGA busy due to ALL the interest rates, and the “Fannie May” and all of that boon at that time. I got hired on to help be the assistant to the lady that did all of the last paperwork for home loans. I had to know everything from what a Title Policy needed and looked for, the note, the deed of trust, insurance, flood insurance, all of the truth in lending information….. I was responsible for making sure we had ALL of that paperwork and it was correct before they could “close” on the home loan. We also “sold” off “blocks” of them. Of course that was to have more funds that would ultimately turn into more blocks of loans that were sold off also. You get the picture. My salary was MORE money that I had ever made at any job in my life! Now even though was was a fact, I still had those rent, car and living expenses to think about. But I had figured all of that out and knew I would be fine. :) I got insurance coverage, I kind of worked my “own” hours. I was a morning person. So, I would come in at 7 am, way before any of the rest of them showed up. My direct boss, bless her heart had a young son, she was single, or about to be, and she usually showed up about 9:45 or so. LOL!! That mattered not, because as soon as 8 hours rolled around, I could leave. So, I went home early most days also. )BY THE WAY this is PRE AUTOIMMUNE ILLNESSES DIAGNOSIS) days… I did suffer from severe migraines, did all my life, and they put me down at least 2 days when I had one. Anyway, dream life for me… not rich by no means at all. But, I saved a bit here and there and would buy a new outfit, or treat myself to something like a little TV I bought for my apartment back then, etc. Anyway, I am sure many people that “knew” me then, often wondered if I didn’t have a “screw or two loose”, or was missing a few cards from the deck, a brick or two out of the wall etc… because I was “eccentric”. I “danced” life to my own tunes playing in my head. I wrote more poetry and short prose there than ever. I didn’t have “friends” per se, other than some online that we had known one another for a long time. I dressed as I wanted (at that time I only weighed like 118 pounds and had a waistline that was tiny like Dolly Parton’s… BUT not the “TOP” of the hour glass like she did” HAHAHA!!… I loved clothes and shoes… yet with it just me, and my bills, I bargain hunted on the weekends at the Mall nearby, and bought one thing etc… as I could afford it. Yet, even though I felt “business” dressed, and I was… I honestly believe the supervisor OVER my own supervisor was quite jealous! Never did figure that one out… the ONLY thing I DID figure out is that she was a “backstabbing, manipulating, ladder climbing, crush the persons under you, and a plain “witch” of a boss and a woman. Okay, now to pull all of this “insanity” together… Hey good word for this “insanity” …….LOL!!! That song by Rob Thomas” “ Unwell” was the theme of my life… I even would quote some of it at times when it was appropriate, “Oh, no, I not crazy, I’m just a little “Unwell”… and if you stay you will see a different side of me”. I still “dance to my own “weird” tune inside my head”…. I am NOT one to “go along” with the crowds, and I REFUSE to HURT< BACKSTAB, MANIPULATE …. and all of those other “nasty words” to ANYONE! I am NOT a Ladder climber! And if I did NOT get the “promotion” or raise for some reason, as far as I was concerned, then I needed to do a “better” job… and those things like more money, a further up position, more responsibility… all would come in good time. I remain the same. I will “take up” for the guy or gal being stomped on, I think that is why I just about HATE politics, I am NOT a “used car sale man” (even hough I did do that for a few months in my twenties), … you get the picture… if MY OWN SKILLS, personality, aura, …. does not put me in that place, then I need to “turn my sails” a different direction and get with the winds of change that shall make my sail into my own smooth river happen. There are so many days, that I say just this… I’m not Crazy, I’m just a little Unwell, and if you will stay long enough, you shall see a different side of me…. and it is very true… even here in Facebook, a few of those who have gotten to really “know” ME, not just the illnesses me, etc… but this complex, but simple, conundrum, and dichotomy that makes up the wholeness that I am… of course the “autoimmune illnesses” and age have “changed” me in many ways… yet that creative, tend to flow on a different rivers path “me” is still very much alive and “Well”!!!!  “She” does not show up as much as far as to others outside my very personal life very much, yet, if you “stay” a while… you shall see that “different side” of me… … And to “honor” that song… Here are the lyrics… and they just tell a story that was a piece of my lifetime….

 "UnWell" 

           Lyrics  written by Rob Thomas off of Matchbox Twenty 
"More Than You Think You Are CD"


All day staring at the ceiling


Making friends with shadows on my wall

All night hearing voices telling me

That I should get some sleep

Because tomorrow might be good for something



Hold on

Feeling like Im headed for a breakdown

And I don't know why



[chorus]



But Im not crazy, Im just a little unwell

I know right now you can't tell

But stay awhile and maybe then you'll see

A different side of me

Im not crazy, Im just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be...me




Im talking to myself in public

Dodging glances on the train

And I know, I know they've all been talking about me

I can hear them whisper

And it makes me think there must be something wrong with me
Out of all the hours thinking
Somehow Ive lost my mind




[chorus]




But Im not crazy, Im just a little unwell

I know right now you can't tell

But stay awhile and maybe then you'll see

A different side of me

Im not crazy, Im just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be




Ive been talking in my sleep

Pretty soon they'll come to get me

Yeah, they're taking me away




[chorus]




But Im not crazy, Im just a little unwell

I know right now you can't tell

But stay awhile and maybe then you'll see

A different side of me

Im not crazy, Im just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be




Yeah, how I used to be

How I used to be

Well, Im just a little unwell

How I used to be

How I used to be
Im just a little unwell