Where Do You "Turn" When you are already "Char-Broiled" by Illnesses, the Insurance companies & Our Medical "Entity"?

How To Turn Over And Change A World of "Not "for" the People, but for The People's Money?

There was a time that I felt "age" and technology moving so very rapidly caused many to not "get the drift" of insurance, medical charges, medical information, & all that goes with that. Well, I am here to tell you right now "age" has nothing to do with any of those things being "confusing". I've found out quite recently, even the medical facilities, doctors offices and insurance companies themselves have no clue as to what they are doing! I've had to get a "crash education" in "diagnosis codes", in the "technical parts" of insurance, medical billing and coding just to get my bills coded, and paid correctly. Two of which I had dealt with since LAST AUGUST~ After 3 APPEALS including myself, my husband, and 5 other people at the University Hospital, working on these, WE NEVER did get Humana to pay those 2 infusions correctly! They continued to try to bill the "Rituxan" as "Part D", which is NOT CORRECT, and then they billed again, and Humana tried to code it strictly as if it were for Cancer, not RA, so that screwed everything up. Alas finally last week, after resorting to ALL avenues even the hospital threw in the towel. They helped me with financial aid for those two bills totaling over $3,000.00!!! They also have me "approved" NOW for the Rituxan infusions until August of this year. After Humana pays all they are going to the hospital will pick up the balance for me. :) Which is awesome news! BUT, in the mean time I was 7 weeks or more late with any biologic! I came down totally ill with two different flares, RA and LUPUS! Along with all of this serious dental stuff that is going to require a Dental Surgeon to probably have to pull all of my teeth, put in a couple of implants, and then put the teeth onto those implants! I go tomorrow to the dentist, but I know just from what I feel and see, I doubt there is anymore "patching". My teeth literally one day seem fine, the next they are breaking off at the gum line, splitting into halves,   and they are almost like coming apart, pieces sloughing off, and it just happens. No rhyme, nor reason. It is the Sjögren's, but all of that was discovered too late. My teeth were already headed down that road probably before 2008, when I first was diagnosed with these Autoimmune illnesses. Plus there is "little" they can do for Sjögren's. There are two pills, I've tried them both. I am still on one of them, but it is not helping really. I constantly have to sip on green tea or something, and I have to constantly chew gum (sugar free and with xylitol" in it) or my mouth is so dry, I cannot swallow, talk, nothing... plus I am constantly having ulcers, sores, sore throats, you name it... . I've already lost 4 teeth in just about 6 months, and I know right now, if these cannot be fixed tomorrow, I could lose at least 4 again, if not more. Now to find an Oral Surgeon, that can "file" this as a medical condition, which it is and it is well documented with ALL of my doctors and now two dentists, that Sjögren's is the issue, and I did have a woman at Humana TELL ME yes they will cover this IF it is a medical condition... and I even got so far as to having them send me a letter stating they will... I may still face having all of my teeth pulled, two implants put in top and bottom, then they almost "snap" the plates in on those to hold them. Regular "dentures" are not the answer for anyone with Sjögren's. Due to no saliva they will not hold in place, and would make my mouth probably less wet, etc. I also have osteoporosis, and it is in the "severe" range. So, that will also be a factor as to how they fix the problem. I could have to have "bone grafts" or some way to fix the bone, if I have lost enough that the implants may not be able to be put in! This is a living nightmare! And the sad damned thing is NOT ONE doctor, or really dentist until I began to discuss it, has tried or talked to me about this horrid disease. Yes, I have it. Yes, it is reeking havoc with my mouth, teeth, bone and gums, but till this moment has anyone offered a "real solution". The ONLY person who has even attempted to find out what HAS to be done, is ME! Plus, this is like major surgery. I am sure the oral surgeon has to put me to sleep, pull those teeth, and then I am not sure about the implants from there, and putting the teeth in. That all depends on my bones in my jaws, as to how it all plays out.... and now I face a major trip 4 weeks away to DC! I certainly cannot go with my teeth literally falling out of my mouth daily now a piece at a time! But, trying to get ALL of this done... no way, no how in 4 weeks! Plus, if things are not bad enough, I have this flare, I was put on steroids again, after an injection, the PA thought I have a sinus infection, which has been wheezing. So, she put me on "Omnicef" but a generic form of it. Well, I have not had any of the "Keflex" type of medications for many years. So, I am on it since Thursday. Friday I noticed my stomach not "right"... but it has not been anyway with the flare mess. So, I take the antibiotics, and by yesterday I have such a horrible, horrible scary case of the big "D" word, I cannot stay out of the bathroom! So, I get concerned, look it up and come to find out, this is probably a "form" of colitis, a secondary infection in my colon, due to it allowing other bacteria to take away too much of my "good bacteria" out of my intestines! I was not that concerned, but it kept getting worse and worse... and it is just I won't even go there... but BAD!!! So, I had already taken some Imodium a couple of times, then read this morning it is better to "talk to the doctor" BEFORE taking any of the anti-diareall's !!! Well what another mess we have here "Sherlock"! I certainly can't even leave the house like this, and now I have another problem on top of everything else. My Enbrel came in Thursday and I took it. But now I woke up yesterday feeling like someone literally knocked me on the ground, and took a baseball bat and beat every muscle in my body. There is NOT ONE place I can touch myself, that does not "hurt"... it is insanity! And who knows, is it one of the flares, medications, something new I am developing???? No biologic for too long, then a new one that I've never had??? I can guarantee "my guess" is probably better than the doctors as this point! That does not include everything that is on the "books" for me this coming month! I honestly fear I will be having to miss the DC fly in. I just don't think with my mouth situation, the flares as bad as they are, and everything else going on with me, I can take a chance to fly to a strange city, going through a 3 day seminar, then stay on through the following Sunday to see Jim's Step Mom. Hell, I can't even go to the store as I am this morning, much less drive to even Dallas! These diseases can really make your life a living hell. When you add on top ALL of the STRESS, with insurance, bills, just having surgery 5 weeks ago, and a few other things going on with "family", that I just found out yesterday, and that I am extremely upset about, my brain is at either go insane completely, throw in the towel, and cover me up for good. And NONE of this includes Jim's ENTIRE ORDEAL with a neck that probably needs surgery, a lower back problem that is not much better, and NO INSURANCE! And don't get me started on the "Indigent" Health help in our county!!! Talk about a joke! That is another complete chapter for my book, if not two chapters. SO!!! IN A NUT SHELL NANCY! You are correct, and it is even WORSE than many know. I just read yesterday afternoon, that "Obama Care" due to the "new insurance crap" may even make getting anything paid through Medicare, and especially Medicare Advantage Plans (i.e. Humana, and the others) even more difficult. They are planning to pay the providers "less"! Well hell, they don't "pay" them as it is. That is why our doctors are starting to not accept them! Because they bill for a 100.00 office visit, and the insurance pays them $3.00!!! or something ridiculous! I realize the medical system is screwed, doctors, facilities all of that is WAY< WAY over priced. BUT it is because the insurance companies PAY NOTHING, thus the circle begins, round and round. And who is stuck in the middle of it? Well us for one as patients! BUT who is it FUELING THE FIRE??? THE GOVERNMENT, MEDICARE! Absolutefrickinly! Yes new word... we have our dear CONGRESS and our Centers for Human Services (not Humane", but Human) to thank for this bill pile of bureaucratic bull red tape. And then it all falls on our shoulders, and we bear the scars all over us where they have just "shredded" humans out of any kind of true health care! It is a total fly over the planet, into another universe, complicated, ridiculous, "corporation greed" let's make money, NOT HOW WE CAN HELP PEOPLE! Thank you to ALL of our Congress, and I mean all of them... local, state, federal.... we vote them in and they vote us as "null and void"....

"How Serious" is "Lupus/RA/FM... MS.. and so forth "Brain Fog"!?

Brain? Fog?   I Can't remember!?

I know for myself, I've tended to make a "joke" here and there... blaming something I misplaced, or did not remember on the "brain fog". I think in the RA... Lupus and all Autoimmune World, we use that not in a "joking" manner, to really joke about it, but because I can bet, like myself in the last few weeks, my "Brain Fog" has turned into no laughing matter.

I am in the very worst flare of a combination of Lupus/RA right now that I believe I've had since diagnosed 4 or so years ago. I mean from fatigue that makes me not able to barely drag myself around my tiny home, to so bad, I cancelled my birthday trip last weekend, to I just do not feel like do anything. The Lupus Headache  - nothing will get rid of but a huge dose of "corticosteroid" and even though I could barely do it, I managed to take a shower, and go slowly into my doctors office to get some medications. Not bad enough I have flares of both, but also a sinus infection plus some "wheezing" she was very concerned about. I had told her I have been "wheezing" for a bit, but just thought it could be allergies, so I didn't let it concern me much. I have an inhaler here, so this morning I decided to use it. I would not tell her that I've been having times of "shortness of breath" the past 4 weeks or so. I could not withstand another test, walk to get an X-ray or anything, so I left with injection done, called in scripts, that I have to pick up today... and got myself home.

I've had all of the signs and symptoms, from low grade fever, mouth breaking out, the Lupus Migraines, the severe fatigue, every joint, even the bottoms of my feet hurt, thumbs, all of my joints are stiff, swollen and hurt. I think I've gotten so accustomed to these stupid symptoms, I "forget" they are symptoms. I just assume they are things I have to live with. But, the one that has really set this flare apart, from every other, is the torrential "Brain Rain" not just a haze or fog... but the horror of ALL of my brain seems to be aged into the 100's or something. I can barely remember my name. I've decided I've got to make MORE lists, for the ones I already have. I cannot recall words, or remember what day it is. I can't spell words, or I forget the word I wanted to use. I have walked around now for the past 7 days in such a spell bound haze... going into a room, and not knowing why... misplacing things, can't remember if I took my meds, or a shower even. My concentration is none... I am barely able to read something and "have any retention" of what I just read. My husband "talks" to me, and I cannot recall in two minutes what he told me... I type everything wrong... misspelling, typing backwards, or just not typing right at all... There are just a NUMBER of "brain" involved things that I have never HAD such a horrible time with before. Sure I might have a bit of an issue at times, with something like a word, or the name of something. Yet, never have I saw myself in this horrible of shape as far as the brain portion of Lupus etc....

My fear, and I even feared looking it up, is that either the Lupus has done something MORE to effect my brain now.... or there are other factors such as MS, Myasthenia Gravis. I have not really came right out and talked about just how I fear what is going on to anyone other than my husband and Mom. I don't want them overly worried, but I've had to let them know that I may "act odd" or say something weird, OR I may just have to get on the sofa, and rest all day. I do have my Enbrel coming in finally tomorrow... BUT, if it has not been for HUMANA messing me around, I could have already had my infusions 6 or ore weeks ago, and I may not be in this kind of condition. That in itself is another story, and I believe I've hung that one out on the line to dry enough, that everyone is sick and tired of hearing my FIGHT with the insurance over my Rituxan.

So, today, or so far this morning, I've read more about the Lupus/Brain situation, as well as what do to, which much of which involves all of the horrible symptoms I've been having. Along with that, a variety of ways to "help" yourself with the pangs of "Lupus" and so forth.
Most of us are aware of some of the brain fog... as I had said above... it kind of becomes a ''running joke" when we forget etc.... most of the things I already do... lists, stickies, I-cal, and more lists. Making me more specific lists I think may help me. Of course as one of the articles said, if you DON"T write it down immediately, then you may lose what is was;)

I've also found myself, mumbling more, which I've "talked" to myself forever, but this is different. It is like I am almost in a hallucination of sorts. I've noticed I tend to be sitting somewhere, like the doctors office yesterday, and in my "brain" almost this odd movie plays... does not have a thing to do with what I was there for, or listening to.... yet within my mind, almost an hallucination WAS playing... so much and frightened me badly. It made me think I was losing my mind! You fear mentioning it, thinking someone will really think that the "padded" cell is where you need to be.

I find myself thinking I am between "asleep" and "Awake".... I know what is going on around me, but yet it is almost as if my brain took a quick trip somewhere else....

Which has been the most frightening symptom... Plus I find myself wide awake one moment, and within a moment..... it is just a very strange place to be..

Anyway, even though I should be either "here", writing on my book, or working on some of my Active Volunteer stuff, I think I am headed for the sofa for now. I feel like I can't hold my eyes open.... so, I shall possibly rest for now... and try doing something a bit more "prosperous" in a while....

Annual Family Christmas Letter for 2013....

                   How Can It Be Christmas 2013 Already?

I’ve been contemplating over writing this “annual Christmas Letter” for weeks. Although it is a tradition, and I am not one for altering traditions; life in itself gives you no choice BUT to alter, change, move, forward, backward, and sometimes even upside down, as far as the traditional sense goes.

I do just sit here in wonderment of just how quickly this year has flown by. It seems each February that rolls around (my birthday month), makes that year fly by swifter than the one before. As kids we fuss that it takes such a long time for holidays, a new school year, Summer to arrive, time for us to have our driver’s license, time to graduate… 
After you are out of school, in a job, possibly have a spouse, a family, and all of the hustle and bustle that goes with those things, time seems to “turn a page” in a greater way than the years before. Marriages seem to go by more quickly, kids grow up just all too fast, and then you are again by yourselves, with an occasional visit from the kids and the Grand kids. 

As I watch my own Grand kids grow, they are also growing from one stage in childhood so fast, and the next thing you know, they are like my Grand Daughter Heather. Here she is a teenager and getting her driver’s license as they turn 16 in the blink of an eye. My oldest Grand son James jut turned 8 on the 6th of December. As I looked at all of his  birthday pictures on Facebook earlier this morning, my memories were of him, just practically a newborn a few weeks after we moved back to Texas in 2005. I am amazed as I think about them visiting at that time, with their first newborn son together; yet now their is the 2nd one Logan, who is sure not a baby anymore either. It was so cute to see Logan right beside James every step he made in those pictures! He follows his “big brother” around everywhere he goes. Then again I see Heather, the oldest as a young woman, not the tiny 2 year old child she was when I first met her. Time has flown by, and it does just seem to fly more quickly with each turn of a page in life. 

We tend to take “time” for granted. So, rather than spend this moment of time fussing about how time flies by, I’ll spend these few moments to let you know a bit about the homes of our families.

Mom is doing well. In fact, she is doing much better than the rest of us in many ways. Her health is good. But, she did go through a bit of a scare with her heart earlier in the year. She had been a bit short of breath, but she called me one morning to say she could not even walk to the mail box without being very winded. So, I called, got her into the doctor, and they thought it was her heart. They wheeled her over to the ER at the hospital next door. Her EKG, blood work, and all indicated she did not have a heart attack, so that was a good thing. In fact her doctor kept her overnight, and monitored her heart, along with doing labs every few hours to make sure nothing was awry. He wanted her to see a cardiologist just for the sake of making sure all was okay. in fact I took her to my own cardiologist, who is just wonderful. Dr. Meg Sullivan put Mom with a couple of other tests, and one was an echocardiogram. There was a “severe” abnormality of her mitral valve, which would not have been caught on an EKG or blood work. It was “sloppy” and loose, thus blood with oxygen is not all getting where it needs to be, thus causing her to be out of breath. The first “echo” was showing this in the “severe” range. That usually means open heart surgery, the only way to repair that valve. I think they have some doctors doing it with a scope, but I am not sure just how well that is going yet. Anyway, I asked Dr. Meg if we could do something “else” before we consider going through a huge surgical procedure. Mom was of course stunned and certainly NOT ready to even think about open heart surgery and I was also quite stunned myself. I think our cardiologist saw that neither of us were exactly thrilled and in fact both of us, Mom and I were in shock. That was the last thing we expected to hear. So, the doctor did suggest that Mom could “increase” one of her medications, Lasix, so it would take MORE fluid from her body. With that, even less sodium intake, adding more Potassium to her schedule, and “decreasing” the amount of fluids she drank daily. Believe it or not, it worked! The Lord was certainly on her side and all of ours. Two weeks after she began this routine, they did another ultrasound on her heart. Not only did the issue go from “severe”, but decreased that “sloppiness” so much, that her mitral valve was almost “normal”, rather than appearing diseased! Talk about miracles! That was a miracle. So far, that was at the first of the year, she has not had any real issues again. I am sure it may come to give problems some day, but for now, she had a 6 month check up about a month ago, and all appears to be well. I was extremely thankful. Mom has been so very fortunate health wise, that I am not sure she would stand to go through something that dramatic as far as a surgical procedure. She is having some horrible pain issues with her right shoulder. It has gotten so bad she is unable to even comb her hair. I’ve been fussing for her to see our Orthopedic surgeon. I feel it could be her neck, since I went through much of the same with mine. After having a shoulder replacement on the right, then also having cervical neck surgery due to continued pain in my right shoulder blade, I fear her issues could be cervical neck related also. Other than this issue with her shoulder, and of course she is having more problems with arthritis, and a bit “feeble” like having to watch going up and down stairs, holding onto rails more, and that kind of thing, she is doing very well to be 78 years old. She sends her love to all.

Both Jason and Amanda; along with Amanda’s husband and three children are all doing okay. Jason recently took a job not far from where Amanda and her family live; about 30 minutes out of Corpus Christi. So, he spends quite a bit of time with her and her family. I  am happy that they have one another close now. They have been close to each other, ever since they grew out of that “kid sister - older brother” stage years ago. It is wonderful to see them enjoy one another and have a good relationship. She stays on the go as usual. Never a dull moment with the three kids and their friends and families. She just doesn’t know “yet” how to sit still very long! Reminds me of “me” when I was her age. 

Jason decided to change a few things in his life. He is out of the career for now of any type of law enforcement, and is now working for a company out of Corpus Christi in the oil business. He seems to like it, and it seems to be less stressful, of course than the law enforcement jobs. Jason has some issues health wise with what seems to be symptoms of Fibromyalgia. He has had “aches and pains” with his joints for several years now. As of this past year it seems that some other symptoms have cropped up. These newer symptoms seem to exemplify more in the range of “FM” (Fibromyalgia)/“CFS/ME” (Chronic Fatigue Syndrome). He has been taking some medication that seems to be helping and our hopes are that he shall continue to see improvement, and be able to continue on with all of his dreams and plans for the future. 

Well, “our home”. Actually things have been not nearly as “upside down” on the health front as the past few years had been. In saying that, I have had “new symptoms” and side effects from the Autoimmune Arthritic Illnesses. They have not been the most pleasant to say the least. I suddenly developed “double vision” the first part of this year. We first thought it was because I was not getting much sleep. So, I was overly tired most of the time, thus it was effecting my eye sight. I went through several doctors/specialists, lots of tests, including a “temporal artery biopsy”, and in the end, one of the best specialists in the field told me, “Frankly, he thinks it’s the Lupus, but is not sure exactly why it is”. He put a totally different type of glasses on me, with spheres in both lenses. They do a great job correcting the double vision, while I am wearing them. With them off, I still see “double”. Although we are still a bit baffled by it all, we also know when it comes to these autoimmune illnesses that have kind of “taken” over; there sometimes it just “not” a “diagnosis” or “explanation” but to say it is one of those. 
I have made change in the RA medication. I am taking “infusions” every 4 to 6 months. The hope is that this medication will somewhat control the RA pain AND our greatest hope is that it will slow down the progression of the damage to my joints. I have my thumbs that are just in terrible shape. The use of my hands continues to get worse each year. Until I have just about lost all use, or the doctors insist on “fusing” the thumb joints or replacing them, I just do things to help assist me in opening things, buttoning, holding and so on. My only other “oddity” is that I recently developed an “oval lump” on my lower left abdomen. I was at three doctors, had a sonogram, and no one could figure it out! (what’s new)… Finally, one of my regular physicians’, PA (assistant) saw me again, and “bingo” she found the problem right away. Of all things I have a “hernia”, actually I now have 2 hernia’s, one on each side; left and right. Only me! From all I have read and been told, hernia’s (inguinal hernia’s) are EXTREMELY difficult to find in females. Plus, they are usually “genetic” in nature. When we are in the womb, well before even “sex” is determined there are two tubes that form, and after that then the “sex” of the baby happens. But, those “tubes” especially in females can be “weak”. That weakness tends to run in families. So, as my PA told me, my own daughter could be subject to having a hernia or hernia’s also. It is only genetic as far as they know, more on the female side. Even though male babies, often have a hernia(s) when they are born, or very small. But those in themselves, supposedly are not “genetic”. I thought it was “wild” but I did some research and that is exactly what I found. I guess we learn something new no matter how old we are. Life to me stays absolutely fascinating for that reason! No matter how lousy I feel, or what is going on, I still love learning something new all the time! Especially when it comes to the “medical realms” of life. 

Jim, is also having one heck of a time with a shoulder/neck problem. He recently had an MRI, and in fact we have not gotten the results as of the time I am writing this letter. Our hopes are, and fingers crossed, that he is not facing surgery. But, it just does not look good. He stays in a tremendous amount of pain, and of all things, the pain is almost unbearable each time he sits down at the computer to work. Well, being the he designs and develops web sites as a career makes it a bad situation all the way around. I pray that rather than be some that needs surgery, that it may be something that is a “chronic inflammatory” process, which possibly corticosteroids in a larger dose, for an extended length of time, and some powerful NSAID”s maybe the answer. Surgery is just not something he wants to face at all. Plus he is without health insurance at the time. As anyone knows that works for themselves, with things in a mess as they are in our country with the health insurance situation, we are not sure how we will face something surgical in nature. But, I know that our “Higher Power” is watching over us, and “He” will make everything happen as it should be. 

I swore I wouldn’t make this long, but here it is, long as usual. I’ll just say a couple more things. I did have my 2nd PUBLISHED book go out earlier this year. I now have TWO books published, and they are on amazon.com   …   I use the “pen” name of “Rhia” or “Rhiannon” Steele. Both are Poetry/short Prose books, and are named “Ramblings of A Seasoned Soul” and the other is “Time Tattered Musings”. If you want to and have a moment look them up and you can “Look Inside the book” on Amazon, on both and read a couple of pages in them. My hope was to have a “3rd” book out by now. My “dream” to  be a “published” author has came true twice! Yet, my ultimate dream is to have the journey of my life in a book published. I have the entire “story” in bits and pieces all over my computer as well as in my blog online, and dozens of “handwritten” journals I’ve kept since I was around 14 years old. Every time I try to “begin” the book though, I just never quite come up with how I want that very first paragraph, page; the first chapter to sound. All of us have “a book” in us, is what I had a dear friend say to me. In a way that is so true. We “all” have a story about our lives, and how we got from point “a” as a youngster to point “b” in our present, plus we have ideas about point “c” where we hope to be in the future. But, some just never write it. I want to take that step and tell my story. Much of it, I’ve never shared with anyone. Much of it, I have shared but with only those I felt could totally understood where I came from. Yet, everyone that knows me well, especially Mom and Jim, have continued to encourage me to write “the” book, book… as I call it. 

I hope to accomplish that “dream” and write the “ultimate”, “Book, Book”, this year. That is if the “Lord willing and the creek don’t rise”, as the saying goes. As far as the “rest” of our family, “Tazzy” and “Bubba Gump”, our two “fur kids” are just as spoiled rotten as ever. They are getting older also as we can tell. Tazz, our Pug, is the oldest. She came with us from Seattle. That was in 2005. She was about a year old then. Bubba, is a
“Chi-Weenie”, and he is a character. They both keep us laughing, and talk about “separation anxiety”. They “cry” if I or Jim leave to go to the store! Bless their hearts, they are so accustomed to the both of us being with them. But, they are a joy, even though they can aggravate the heck out of us as times also. Just like 2 kids for sure!

My “projects” are many. It seems I always have my “fingers” in a different pie. I recently became an “Active Volunteer” for a non-profit Foundation that is trying to help bring awareness to Autoimmune Arthritic Illnesses. I just “graduated” from a several month class learning about the Foundation, and all they are accomplishing. It is truly an amazing story. The “founder” began about 4 years ago, after she was diagnosed with Rheumatoid Arthritis. She wanted to make a difference and she has truly already done “miracles” through what started out as a “Buckle Me Up Movement” and a bracelet she made with a “belt buckle” at her apartment in San Francisco. From there it has grown to her and 4 “co-founders”, became an official non-profit foundation, and is about 35 volunteers strong and growing quickly. She has honestly accomplished things in 4 short years that many would never accomplish in a life time. And ALL of us have one or more Autoimmune Arthritic Illnesses. The Foundation is International Foundation for Autoimmune Arthritis. I would love it if you have a moment to take a look at their website. Even it does not really tell just how incredible this truly is and how many lives she and all of us as a team shall touch! You can visit the website at: 
http://www.ifautoimmunearthritis.org  …
Also, I will be doing some blogging on their own blog, which is called “Systemically Connected”. Plus my own personal blog, “Gaze Thru Pain - Lupus/RA & This Foggy Brain” is the name of it, and the URL to my blog is :  
http://rhiannonsrisetodreamstate.blogspot.com  …
I have to laugh, of course, as I say every year; I’m not going to make my “Annual Christmas Letter” so long! Of course it is always long, and probably longer than usual. I find as I write, there is lots more that went on during the year, than I think did. 

My hope… Our Hope is the you and your families are healthy, happy, and enjoying one another throughout the holidays. May you find peace, joy, and most of all love throughout 2014 and beyond. Know that we think of you often; even though we aren’t close physically, in our hearts and spirit we are always right there.

Much Love, Merry Christmas and A 2014 that shall be Wonderful!  Rhia,Jim, Tazz, Bubba… and All of Our Family!!!! 

Chronic Illnesses/Autoimmune Arthritic Diseases - Do You "always" HEED Your Physicians' Advice?

Must you "think" you have to do "All" Your Doctors Tell you to do?


First of All, the "post" below in red is a post I began yesterday evening on Face Book. When I began really getting into the "subject" matter at hand, I KNEW this would make for a HUGE BLOG POST! This is something that just about everyone of us has dealt with one time or the other. If not, then you probably don't go to a physician's office very much!  So, I will let you read the "red" portion - then under it I will "further" write about the title of the blog... "Do You ALWAYS HEED YOUR PHYSCIANS ADVICE??





Well GOSH!!! A MIRACLE HAS HAPPENED!!!! I am already HOME!!! This is WAY too early when you go to our PCP!!!! IF your appointment is at 2:00pm. Usually you spend until about 4:30 pm waiting in that tiny room, staring at the walls! We only had to wait 45 minutes!!! Talk about a joke! Why the hell he insisted Mom come I have no idea. All HE needed was ALREADY there, from Mom's Cardiologist as I SAID!!!! (Twice)... and rather than address her other issues, he begins to exam the stupid shoulder! Then he proceeds to tell her "he dos not think it is a rotator cuff tear" and told her to do two exercises and it should get better!!! Now we never said anything but that it was bothering her. But we did mention we had seen a doctor about it to the nurse. Now, I know for a fact that the "clinic" where my heart doctor and our orthopedic surgeon is DO NOT GET ALONG with the clinic where our PCP, food doctor, my new GYN doctor etc., and also my surgeon who is supposed to be the hernia surgery! So, all he did is mix Mom up. Now she is "questioning" whether to even have the MRI. As I told her number ONE the Orthopedic surgeon is the "expert". And the PCP, is very intelligent, but he is NOT a specialist. SO, I told her to take all of that into consideration as well as how the shoulder feels and is doing (she seemed to think it is better today... well yes, she has not used it in a couple of days, thus of course it feels better. YET, I also told her a doctor is not GOSPEL as far as His "recommendation" as myself, I DID NOT BELIEVE even after FOUR DOCTORS told me there was NOTHING in my left lower abdomen... I KNEW THER WAS!!! So, I went to a doctor until someone knew enough to find the issue. Thus I did, it is two hernia's and at least one needs to be repaired! As my husband and I talked about a while ago, even when we were "growing up", we were "taught" that our "doctors" are like "Gods"... they know it ALL and WE MUST DO AS THEY SAY!!! BULL!!!!!! OF course you NEED to pay attention and for the most part take your doctors advice. BUT it is NEVER mandatory you MUST do as they say or not say..Ultimately it is YOUR body, you know it better than anyone... and if you do not agree, either just don't do it, or do it, or find another doctor! I learned about 25 years ago or more, I NEVER think my doctors know everything, or do I think they can DO NO WRONG! As a whole the majority of our physicians are highly educated. the continue to be educated, they pass board exams, etc... BUT THEY CAN MAKE errors... or just because they say something does not mean you have to agree with it a little, a lot or at all!!!! Actually this is a HUGE issue, and I am going to put a big blog post up about this very thing.... from first of all, they are "human"... second of all, not all of them are "nice" especially surgeons... and so forth... it will make for a terrific blog posting:) I'll work on it tonight and in the morning and post here a link when I have it completed!






Onto further discussion of this subject...

As I got into up in the Face book portion of this post, I began writing about how just a few years back, most of us, whether you were younger and growing up, or you were already an adult, when you went to your doctor (for the most part we saw ONE doctor for just about everything!)

I recall our "MD"S" here in Ennis could "do surgery", deliver baby's, treat you for the flu, or any illness, an take care of just about anything you needed. Unless it was some extremely odd, you were not "referred" to a specialist. There wasn't that many "specialized" doctors then. They saw you if you were an infant, or if you were elderly. It was a "one stop shop" as you could call it.
Then I began to notice right after my daughter was born, (after 1985 forward) many of our regular MD's stopped delivering babies. Several here just stopped all together. They sent you to an OB/GYN for that. I realized at that time, if I doctor did it "all" he was up, day and night, away from home, especially if you did any type of emergency stuff for your patients or a baby was coming you had to be there. So, it made sense to send women to a doctor that did that type of stuff. In fact, I guess there was a time we did not have a doctor right here in town to deliver, so you either went to Corsicana or Waxahachie for a pregnancy. That was also when you did not have a "stick" to pee on to tell you about a pregnancy or not. I "guessed" both times just due to the morning sickness etc. 

Then I began to see our older doctors, our MD's that did everything from "soup to nuts" retiring. They were all elderly, and were tired and worn out. I feel some stayed on way too long just because at the time we didn't have many doctors here. As we progressed over the next few years, I began to notice we had more specialists popping up. Our MD's the newer ones coming up, chose NOT to deliver babies, or do surgery. The left things like that up to the more specialized physician's. Again the problem with that was "lack of specialists" in small towns. You traveled usually to Corsicana, if not DALLAS, for many things that the family practitioners were not handling anymore. I think for many of us, it was a HUGE change! 

You had folks like my Daddy that remembered when the DOCTOR CAME to YOUR HOUSE! A family member went and got them. Then the doctor came to you, you didn't go to him. But that soon was to be changed as our small communities began to grow. Then you had people my age, that were used to a "family doctor" doing it all. So, even at first with myself and others my age, this "specialist" stuff seemed like more of a burden than anything. Well of course it wasn't too long until doctors began to branch out from that "family practice" into more and more specialized fields. We had a larger population even in smaller communities, we were more of a "mobile" country, everyone just about by then had a car in the family, so we could go to a specialist in the next town. They knew more about particular health problems, than our regular doctors. So, they were much more of a help, knew more about the "latest and greatest" whether medications, surgeries, tests, lab work. That specialist had been trained to be "specific" as to the needs of patients sent to him.  


In those first years of the "specialists" I feel most people were thankful for the change. Especially when it came to more of a "serious" illness such as heart issues, kidney, lung, stomach all of our vital organs, having someone that performed medicine on a daily basis of that one type just made sense. 
From there, and I'm not exactly sure why; but taking an "educated" guess we began to see more doctors going into a further very highly specialist part of the medical field were a couple of things. First of all, we had a larger population. Thus the more people, the more illnesses we began to see. People began to live longer, thus the "elderly" population living more years meant they were subject to becoming ill with other diseases, such as diabetes, arthritis and the like. The 2nd reason was due to the fact that a physician that went to college and through all of his studies in a much highly specialized field of medicine, meant they would be able to charge more, thus make more money. I'm sure that is not how we like to think about it, but of course it is true. The higher the specialty, the more money they are able to charge for having those talents and education. 

But, bringing it up to "this day and time", and doctors have just about "specialized" themselves to the place of being ridiculous! I know some of it again is more people, living longer, more research means we know about more illnesses and how to treat them. And again the "higher" up chain of speciality means the higher they can bill insurance and the patient. A great example of being to the point of almost ridiculous in specializing, is what I went through with the "double vision". 

I had it come up suddenly one night, and thought since it was late evening, watching television, and the fact I had not been sleeping well at all for weeks, I was just having problems from lack of sleep. So I let it ride about 2 weeks, and decided to have a visit with my opthamologist.  So, I went in to see them, they saw that I had "double vision" going on, put a "prism" in my glasses, and wanted me to see a "specialist" that in all honesty, I had never heard of. This was a "neuro-opthamologist." So, since I am already used to the fact with autoimmune arthritic illnesses along with my other ailments that are chronic in nature, no longer is it uncommon that I am sent to some type of a specialist. I go home, with the name of one, which turned out did not take my insurance. I began my own search online, along with my insurance information, and come to find out there were only 3 of these specialists in the state of TX & at the time 2 in the DALLAS AREA! So, I see one that looked promising online, etc. I call figuring it would be MONTHS before I would get it. this doctor could see me that week! My thought was that since he did something that high up on the "food chain" of sorts, he probably did not have a huge cliental. I go a few days later to his office in Dallas, and not only did he have a HUGE number of patients, his STAFF had to be something like 50 PEOPLE!!!! It was totally nuts!!!! To try and shorten this story, it came to pass yes he had MANY patients, because he was the ONLY specialist in Dallas that took these types of patients, other than one other one that took months to get an appointment with.

All in all, I went to the other doctor at Southwestern Medical University in Dallas, who was in my book a "REAL" doctor. That is why it takes months to get into him, and the other doctor first of all was a total "jackass", another story that I told right after that happened, but he also had this "trained" staff that did EVERYTHING!!! They did every part of the exam, put it all in the computer, and took you to put you in a dark little tiny room to see the doctor. Well, he never even touched me, examined me, nothing... all he did was look at what the results from ALL of the other people did, make a stupid remark, and say he wants to see you in a week! You can just imagine the shock and frankly horror I felt! My husband and I left there in total SHOCK that a doctor of his "magnitude" ran basically a "cattle farm". You were "herded from room to room, poked and prodded by his "staff", then sent onto listen to him saying nothing, but see you in a week! He put me on a bit highly dose of predisone, done blood work that he admitted would probably not be accurate due to the fact I am already on prednisone, and and when the blood work did come back with a very "slightly" raised level of inflammatory problems (well yes I have autoimmune illnesses) he decided to do a biopsy on my temporal artery. here is this doctor, who has not laid a hand on me basically, have had his staff run the same stinking eye tests on me for 3 visits, and now he wants to suddenly do a biopsy on the side of my head. I SHOULD HAVE LEFT THEN!!!! 

So, now this leads me to the MAIN SUBJECT I want to talk about. I realize that was a long route to get here, but I felt it necessary for me to mention just ONE of my situations with a doctor that I KNEW was not right. Yet, even with all of my research and due to it being "DOUBLE VISION" and if it were "Giant cell Temporal Arteritis" that meant without proper treatment I would eventually go blind. So, when you are faced with some that could be that potentially detrimental to your health, you tend to "disregard" your own feelings of RUN! I did actually go to my regular MD about it before having him "cut" the side of my head open a bit" and also take a slice of my temporal artery out, I needed another opinion. My MD just wanted to make sure I "followed the specialist" guidelines because in all honesty my PCP has not been in on this at first. I went directly to my eye specialist and from there was sent to another "specialist" so my PCP really did not even know about the double vision until just before the "biopsy". 
Against my own judgement, even after weighing it back and forth with my husband; we thought the doctor was a "quack" that was in such a specialized field he could do people this way, because he was about the only doctor in this entire area with this type of training. Other than that it meant going to Austin or Houston! 
I finally, still with much hesitation, went to allow him to do the biopsy. Now, that entire thing was such a horror story that morning, that I won't get back into it now. But, there is a post about the whole thing sometime about October of last year. I will look it up and post the link to it here after I finish my post... he did some thing that was SO TERRIBLY WRONG I filed a formal complaint against him to the Texas State Board of Physicians. Then they did take it so seriously that the investigated and even had a hearing about it. I could have went, but I chose to send a letter to the judge instead. It was in Austin, thus I felt I had given them enough information, along with the hospital it happened at, my presence was not necessary. 

This brings me to the "POINT" at hand. Do YOU as a PATIENT always take your doctors word as "GOSPEL?" So you feel that even though you may have a gut feeling that is different, or possibly you have researched all of the in's and out's of the "diagnosis", or symptoms, seen something that made more sense on Social Media, and so forth, you should NOT question your doctor's "authority"? If they tell you, you need a "certain" test, or even possibly surgery, do you just rely on the fact that he is the "expert" and whatever your physician (s) say is right? Do you think you have the right to question them about what they say? Can you tell them you don't agree possibly with all or part of what he or she tells you. Another thing, if you do research online and find what you feel maybe something such as a new medication, or more critical advice that certainly could pertain to you, do you print it and take it in? Do you take a list in of points you want to discuss? Do you feel YOUR time is as VALUABLE as your doctor's? Do you feel it is okay for them to say they will "charge you" if you are over 10 minutes etc late to see them, but they can make you sit for hours, while they are "chronically" late every time you go in? While we are on this subject, this also pertains to your pharmacist. So you think your pharmacist has the right to disagree with your doctor about a particular medication, treatment, etc? Plus do you think your pharmacist should have the right to sit down, discuss ALL of your medications with you, and be allowed to "change" something? Plus the "insurance" company you have "tells" your pharmacist they get paid for every patient they have a "consult" with!!!! 

Now I've opened several cans of worms. My hopes are to get YOU to thinking about your own situations as patients. For one for myself, I totally feel that it is OKAY for you NOT to feel your doctor is always right. They are "human", in fact usually overbooked and busy humans. Now I have noticed they do not even take a moment to glance at your chart. They barge in looking hurriedly at you, ask you a few questions, and if you do not stop them yourself (after you waited for HOURS to see him or her) they zoom right on out the door, the nurse hurries you out and down the hallway. The front office makes an appt. for a follow up if necessary, collects your co-pay if applicable, and out the door you go. This is before you had a chance to ask one question, after you've waited possibly hours for them, and it is always they had an "emergency". Now I agree any doctor for the most part can have some thing emergent. BUT, NOT ever time you go in for an appointment that ha been scheduled for 3 months or more! That has turned into the most ridiculous excuse, and very old. I half the time or  more do NOT believe that! What the have done, is booked 2 or 3 PATIENTS at the exact same TIME, thus he can't be in 3 rooms at once. Then if he has a patient that does stop him with a list of questions, and expects answers before he flies out the room, of course he has to answer and you are the one, that if you don't make him stay and answer questions that gets the raw end of the stick so to speak. So, you can believe when I go for a "follow up" visit that is one I should have my "time to speak" I take MY LIST and he does NOT leave that room, until I am satisfied that I've gotten the answers on the questions. If it taken 5 minutes or 30 minutes, mine probably dread seeing me come, because the they know me well enough to know if I have that yellow piece of paper in my hand, I do have a list. 

I have heard of a case of a lady here in the nation, that got more than tired of having her time taken up for hours and hours every time she went into her doctors office. So, after putting up with it for a long while. She kept up with just how late he was so she could prove it. Then she put together an "invoice" and mailed it to him with a note that it was for the "loss" of time she had due to his chronic tardiness. She had it just in detail about hours, days, etc. Now, I don't know what happened. I am sure she did not ever see a dime! BUT, she did get national media attention, which put it on his mind and other doctors that a patients time is just as important as theirs. We have lives, jobs, families and all that need our attention also, rather than sitting fir hours in a cold 6 by 6 foot room, waiting for he or she to show. 

What about thinking a doctor is "God"? And what he says has to be the "gospel" of being right as to what maybe wrong with you, what tests you need, if you need surgery and so forth?

WAKE UP FOLKS!!!! This is a NEW TYPE OF WORLD!!!! WE for the most part have the ability to find out information from all around the world, from the best specialists, the best colleges, researchers, and organizations that can give us all kinds of great information on why, what, how, when where and so on!!! With a few key strokes you can see what the FDA is doing on a new drug possibly coming out, new meds in the clinical trials that you may qualify to even be in. You can reach out to other physicians that do put their information online or are willing to try and answer some of your questions. You can virtually watch someone else have the exact same surgical procedure that maybe in your near future. From any type of medication, to any type of disease, illness, syndrome, lab work, MRI, CT, PET, and the many, many other types of tests... you can see them, read about them, and even talk about them if you chose. We are becoming a group of people that will be looking for a higher speciality in how we are being treated as a patient. So, I feel we, any and all of us have the right to question our doctors, decide if a 2nd opinion is in order, or maybe even a 3rd or 4th! If you have a "gut feeling" that tells you something is just not Kosher, then LISTEN to yourself! Often since we know our bodies better than anyone else, if we pay close attention it will "tell" you what is happening. Now, that does not mean we are always right either. But, taking a very good look, and listen to the grander situation, and also not only that gut feeling, but objectively. In other words, try and think about what is happening and what doctors maybe telling you about someone else and you are there as a care taker, so you can have a vision all the way around when it comes to decisions about your health. OUR HEALTH is the MOST IMPORTANT piece of our lives. If we are not in good health in some way whether it be acute and temporary, or chronic and long term, we cannot be who we want to be, and do the things in life that we want to do. 

So, listening to your own mind and heart about illness, medications, doctors, procedures, surgeries and so on, is vital for you to make a choice that you later can live with. I know the couple of times I allowed myself to be kind of "hornswoggled" into a medical situation before I had time to weigh it, I  wound up to regret it. 

Doctors are just humans, that yes have a great deal more education than many of us, in the medical field. For the most part, your doctors are probably giving you good advice and treatment. If they tell you something, then more than likely you can bank on it is necessary. But, anytime you have that feeling, no matter how large or small what it is you are questioning, do so.

You can FIRE YOUR DOCTOR! If you have a physician that is just not a "good fit" in any way, find another one to go to. I decided a long time ago, unless it was just a point that I could not for some reason see another doctor, I have several things, but two HUGE ones when it comes to staying with a particular physician. They MUST have a good "bedside manner"! Unless I may not see that doctor again for some reason it may not be that important. But if it is somebody I am going to have to see on a regular basis, they MUST have a good, preferably great bedside manner. The other is that they MUST not mind me looking things up online, or printing something to bring in and so forth. Now, I don't mean I am going to question everything, every time that happens. If I don't trust my MD that much,, then I would change doctors. What I mean is I don't want some grouch to tell me, oh you don't know what your'e talking about. Or just because you look something up online, you can really trust it... and so on... They need to be open minded to the fact we do have that capability and many online resources are very reputable. 

The fact of the matter for me is, I have been through so many physicians, of all different types of specialities, some maybe 3 or 4 of the same specialty...due to the chronic types of illnesses I have, I feel I have more than the right to research my own illnesses, my medications, treatments, and if something sounds "better", or not so good... or whatever I may find, I feel my doctors should absolutely listen to mat at the very least. If they agree, then that may mean I get a better treatment, and possibly it may help someone else along the way, or if it is something not for my situation, then I expect my doctor to take a moment to explain why they feel that way. 

As I had said in my original Facebook post at the top in regard to what I told my Mom. YOU don't have to DO or NOT DO any and everything a doctor tells you. They are not SUPER human, and even though they do know more than us in many ways, they can still "miss the mark" or just be wrong. You have to think for yourself... and go by what feels "right" for you.

I just went through it. I went to 2 of the PA's in my PCP office. I went and had a sonogram (of which I told the tech it does NOT show up when I lie down). Thus nothing showed on the sonogram. But I also knew that LUMP was not THERE BEFORE and SOMETHING WAS WRONG... and after I did enough research I knew more than likely it was a hernia, and not cancer or something like that. I also found out that hernia's usually do "disappear" and especially on women are hard to detect. So, I go to my Gynecologist, and again she has no clue. I go BACK, see our other PA, and she right away says it is a hernia, and the other knot the just began a couple of days just before on the right side is also a hernia. Plus I find out they are genetic in women! Thus my daughter is subject to the possibility she could also have one or two. Even the surgeon told me they are extremely had to detect in women... but it is there and at least the left one does have to be repaired) SO, again just a reminder even when you have been through that MANY "doctors" you can still come up and find they "missed it"... and you may "find it"....


I would LOVE TO HEAR your stories about this, and your thoughts...... 

Just a Couple of Happenings in my World to catch you up on...

YEAH!!!!!! I FINALLY got to finish the project I need to finish!!! My computer crashed out at the very worst moments of my life... I was in the middle of a "graduation project" for becoming an Active Volunteer for IFAA! I was just in the beginnings of working on it, when whatever transformer blew down the street, that took my I-MAC with it! i finally got my new I-MAC in Wednesday, and as I said I think the FEDEX man deliberately waited to bring mine as the very last delivery of the day! He always comes by 3pm. It was like 5pm before he arrived... I thought maybe he crashed his truck or something.. then of course we had to get all of my stuff off of my back up drive and onto my new one. And then settings, mail, you name it, of course, it had to be done. Plus there are SO MANY new features, that I am loving already and more I have to even learn about. So, finally after some Friday, part of yesterday and most of this morning and part of the afternoon, I finished up my research and just emailed it to Tiffany, who was the Founder, and now one of the 4 co-founders of IFAA! I also think I may get to participate in some other activities with another big health advocacy organization! I'll know more this week. PLUS HUGE news!!! I've had a couple of days over the past week almost 500!!!!! people on my blog!!!! I am so thrilled! I am so happy I didn't give up. So, I know it is something that is meant for me to do. I am also going to be a "lead blogger" on another site (one of the Lead bloggers)... there are several... and when that is official I will also post that too.... I finally feel like the work of all the advocacy that I feel it what I am here for is finally coming together! Lots of patience, lots of just waiting until the right moment, the right people, and the right time comes along... I am absolutely exhausted, but I am absolutely thrilled about all of it. 

There are some great things happening and I am honored to share them with all of you. You are the ones that make me keep going. Even when I "see" only a couple of "fans" have been here on one day, those over 400 the next makeup for it! I appreciate every one of you, and my hopes are that each of you will give in a bit off yourself, and comment on some of my posts. It doesn't have to be long and drawn out, but a few quick words about your feelings will always be welcome! As this holiday weekend winds down, and we look ahead just a few weeks until the next BIG TWO are coming soon, I hope everyone is safe, happy, and well. We always hear "take care of yourself", or we catch ourselves saying it, but most of the time, WE think we know better; and for the most part we do know ourselves better, just sometimes we don't "listen" very well!  

I hope to be back on the right track since the new I-MAC has arrived, and we shall see what the surgeon has to say about these darned hernia's tomorrow morning... I'll keep you posted...

Rhia

"Hectic Home" for the AAI Holidays???!!!

"Hectic Holidays For All of Us in a Foggy Brain Haze!"

ONE HECK OF A TYPICAL MONDAY MORNING! 50 plus things to do and I don't know where to begin first! With this being a holiday weekend, which for us as far as the "day" itself, is not all that much trouble. We are taking Mom and going over to Waxahachie to eat at the buffet there at Ryans'... and more than likely we are headed to Winstar for XMAS!!!! I have a new coupons for 2 nights if we wanted to stay in their NEWEST 500 room HOTEL!! I hear it is fabulous! ;) Of course that is a while away. That will depend on weather how all of us feel etc. If we do we can't go but 1 night. I would not leave my dogs but for one night alone. They already have separation anxiety if just one of us leaves for an hour. So one night with us gone is about all they can handle. Even at that it is gotten to where we have to keep them only in our kitchen. We started having issues about a year ago with them peeing where they are not supposed to. Both of both have been house broken for years and years. But, something went on with them a while ago, that every once in a while for no reason one of them will pee in the floor, like behind our sofa etc. I have tried everything, but they get better. Like now this past few weeks has been so much better. But sometimes they will start it and do that for weeks, and then they seem to stop again. So we just don't just in leaving them if we are both gone for an entire day or so with the run of the house anymore. We did for a very long time, until this issue came along. IN fact they have gotten a bit older and I hate going off even over night without one os us here. But, they are always very safe and my kitchen area is huge! So, they are not just crammed in a tiny spot. They have lots of room in my kitchen. Anyway, enough of my moaning and groaning... then either I am having a flare start, or I am just too stressed. I am just on overwhelm.. and I know all of us are. The holidays are an incredibly stressful time for everyone! Then when you are chronically ill, with Autoimmune Arthritic  illnesses such as RA, Lupus, Sjogren's, plus the other hundreds of these diseases & that includes those with chronic pain on top of the entire ordeal,  it puts our "stress" into a whole new category!!!  Then add on how your entire "schedule" gets all turned upside down. For instance, I have a "set" time everyday that I take my medications and eat something for "breakfast". Well that is after the 1ST ONE with all of the pills, as my husband says. Then I also have a set time or day of the week that I clean, mop, sweep, even water my plants, and so forth. Well, this past couple of weeks from all of the "added and unexpected stuff" as in weather change so dramatically, Mom and a medication issue, my computer crapping out on me, Jim and his shoulder still not well, I am not feeling ll that well myself, and the list of "extra and unexpected" just just hindering the "regular" one. Then I had gotten blown out of the water with the holidays so quickly upon us! I haven't written my annual "Christmas Letter", there is fudge to make;  fruitcake that needs to be made early so it takes up all of the flavors. That doesn't include the other one of many things I am just now thinking of, which is we usually make "goodies" that we either put in a basket or a decorative tin. WE take those on Christmas Eve to our close neighbors (about 6 homes) and have made that one of our traditions for Christmas! Then I JUST remembered (another THING forgotten due to my COMPUTER crapping out) is our ANNUAL Sleigh Bell by Wallace we order every year. Since the first Christmas we were together we started buying these sliver and gold sleigh bells made by Wallace Silversmith's. In fact last yesterday we "celebrated" 10 YEARS of them! In fact they added a little note inside the one last year about they saw the we had ordered from them every year.  Actually a store in Kent WA that we found the first Xmas called Silver Superstore. That year it was so late and almost Christmas by the time we found them, that we got the very last one they had for that year. So, now they email me about 2 months ahead of time as a reminder. Well, until a moment ago, I had forgotten that I had not ordered it yet. Som I just told Jim while we were standing on the front porch I needed to come in and order it before they rub out. Low and Behold in my inbox, there was a reminder for me so I would not forget to order it!!! Now call that "ESP" or not... anyway I sure as hack just ordered it! :) If we do NOTHING else we made a promise that we would ALWAYS get our Sleigh Bell no matter what. :)

So, as I make out my TO DO LISTS, and the LISTS to "remind" me about my lists... and that list to make sure I don't forget about all of the other lists... I realize that in "reality" I am going to have to take one breath at a time, do ONE thing at a time, and also "step" into these moments to know there is no way I can do it all. Either I need to "cut" some things down smaller, or less, possibly try to NOT do some things, and then NOT feel "guilty" because I could not do it all.

As much as I sure as heck (like EACH of you) want to think I am "super human" especially with all of my "bionic" parts, one would think I was Super Human... I am admit I'm not... no longer can I do it all, be it all, make EVERYONE happy all the time, and be able to go on and not stop to find out I am just worn to nothing and come into a huge flare. Which I fear I am having now. Between sudden cracks in the corners of my mouth, my throat soar, and feeling just out of it... I feel as if I am definitely 'flaring" .
So I remind YOU! PLEASE TAKE CARE OF YOU FIRST!!!! I know, I know, we hear it constantly... but if we don't we honestly not of help to anyone if we make ourselves ill. So, some times as difficult as it is to say NO... that two letter word needs to be a GRAND word in our vocabulary.


I close for now in saying, that we are super at all the things we DO get done! We are NOT a disappointment if we aren't able to do it all.

A "New" place called "Off the Cuff" on my Blog and the First Official Post on It!

I hope all of you have a had good past few days. If you have "missed" me, as I said on Facebook, then I am happy to know you did! LOL! If you didn't then that hurts my feelings a bit. ;)
                                                 

"Off The Cuff" 

As I wrote on FB, Mom and I were gone overnight to the Winstar in OK! By the way, if you have not been there, or have no idea about the place, well, it makes some of the casino's even in Vegas look tiny!!! It is supposed to be the Biggest Casino in the WORLD!!! And if it isn't they are trying their damn hard get there. It is well over 2 MILES to walk through it from one end to the other! You ca n imagine when you walk through the slots for hours and hours how much exercise you get! AND IF IT IS NOT big enough, they are adding yet ANOTHER hotel (They have 2 and a smaller motel), plus adding about another 100 or more slots. I just cannot fathom to tell you how large it is. I've been to Vegas and as far as the "casino" itself, I don't think any of them are as large.

Now, for one. I had an idea this morning (through all of the fog that is in my brain) that I would do something called "Off the Cuff" in my blog. Mainly I write about Autoimmune Arthritis, Sjogren's, Lupus, Chronic pain, illnesses and other AI diseases. I post all kinds of things from the latest information about treatments, articles from some of the foundations, and so forth. But, I also like to throw in some of the more "personal" pieces of me. I talk about my own illnesses, and treatments, plus all of the things that go along with them in life. I have always wanted to "help" others "see" that through my own experiences, they also can have a "good life", but NOT FEEL GUILTY about being "chronically ill". It is very difficult to go through life, with a daily illness and not have it "consume" you. I know, because I have to work everyday NOT to allow it to do so!

So, I wanted to say first of all, I am thrilled for everyone that makes an effort to come here. I hope that since I have given the blog a whole new look, and the way you can see it, that it will be much easier to read, and use. So, that is my first step. Bear with me, because I know I will be making more changes as I go. For one, I will be adding more URL's that pertain to the Autoimmune Arthritic Illnesses. Along with treatments, non-profits, places for you to get information on them and so forth. I am also adding other "blogs" that I enjoy. They are also about these illnesses, how they effect their lives, and they can help you understand some of the things in your own life that happens.

Okay, on this first "Off the Cuff" post….

Mom and I went to Winstar in OK, as I mentioned above. We left early Sunday morning, and drove arriving about 10 a.m. It is about a 2 and a half hour trip. So, at about an hour and 15 minutes of it, we have "our morning" stop every time we go. There is a "McDonald's" at the half way point we always stop and get our "breakfast"…. LOL!!! Usually it is the same. Biscuit and sausage or an English Muffin and sausage, plus coffee! We are "big spenders" as you can tell! It also gives me a moment to get out of the car, rest my legs etc, especially if I am doing all the driving.

From there of course as I said above the place is "Gianormous"… if that was a word! So, we have our particular door we park at, and as always that is our first stop. We were spending the night on "their dime" this time. Winstar had sent us free rooms for 2 nights, thus that is when we stay overnight. Which is better for me if Mom and I go alone. I don't get so tired out from driving both there and back the same day. Well, we played for hours and hours. In fact, I pulled out a $20.00 bill when we arrived. At 4:30 that afternoon, I STILL had my 20.00 plus some on a ticket! LOL! So, I was in good shape in that respect. It is just hard to believe how many people are there, and how huge the place is. Around 2:30 pm earlier I had went around to the hotel that is "attached" to the Casino. (They have a brand new 500 ROOM one behind it!), checked in so we didn't have to worry about that later. We didn't even go up to the room at that time. We went back to play, then ate around 7pm, and by 7:30, (I had pulled a stupid stunt and wore the "wrong" shoes this time), my feet were hurting so badly, I thought I was going to have to go barefooted to get the car, take it behind the casino to park at the hotel entrance, then let Mom out with the bags, parked it and then finally got back in.


  Anyway, needless to say, by the time I got up to the room, my feet were in such bad shape, my little toes were almost bleeding, and I had two "stone bruises" (like blood blisters) under my big toes. I had worn a pair of black dress heels that are a bit "platform". I have a brand new black and grey striped very long skirt I wore and needed those heels really to wear it. But fortunately I always take another pair of shoes, which I took my sandals so that way, I can wear those when I have my feet worn out! I know stupid, but I know you "girls" understand what I am saying. I so rarely "go out" like that, so when I do get to go, I want to be "dressed to the nine's"… So, for me it was a huge ordeal to get to dress up and wear those heels too. Of course I am paying the price for it, but still it was "partially" worth it… :)

Anyway, a couple of "odd" things that happened. First of all, we had already gotten to the room, had talked, changed clothes, and was watching television. Mom was already asleep, and I heard this "KNOCK!!" at our door. Well, I knew there should be no one knocking, and I looked out the peep hole, and saw no one. I just figured someone was at the wrong door by mistake, and went back to bed. Well, it happened 4 MORE times that night! Each time not a soul was there, that "I could see". There was no way I was going to open that door at all, and it was dead bolted and locked down, so I was not really worried. I guess I should have called the front desk, but it was wee hours of the morning and I just said to heck with it and went back to bed. The one thing I did realize is that our room was the first room out of the elevator as you began down that hallway. So, someone could knock, then just step around the corner so you could not see them, and maybe they thought if they knocked long enough someone would be stupid enough to answer. Plus even though the place is huge, I also know at times, Mom will even say, that sometimes a "guy" will be looking at me, and of course I don't see it. I DO watch my surroundings of course when we go alone, but as far as noticing someone "watching" me while we gamble I am not aware really, but she is. So, when we checked out yesterday morning I told them, and mentioned where we were as far as the elevator. I kind of got to thinking about it on the drive home, and felt like possibly someone noticed we were "alone", not had anyone with us, like Jim in other words. Maybe someone did happen to be watching and followed us. Then thought maybe I would be stupid enough to open the door if they knocked enough times. I thought about it because when we got in the elevator that night on the way up, a guy got in right behind us. He saw what floor I pushed, and when I asked him what floor, he say the same as we were on, the 11th. Well, at first it did not really bother me, but the guy just kind of acted "odd". Plus I don't recall seeing him go down "either" hallway… you could go left or right after you got off the elevators. Our room was just off to the right, by them. So, it dawned on me, he may have followed us from the Casino to the elevators. I was so tired and my feet hurt so badly, that I probably didn't think about it. I had left Mom in the lobby with our bags, and went to park the car. Stupid me, didn't think about just letting the valet park it. I was thinking I would get in the handicapped place and it would be close. Well, hell they were all taken of course, and I had to park a good ways off. But, I thought he may have seen me let Mom out and then followed us as we went up. Maybe not and maybe it was someone just being as ass. But, usually in a Hotel at a Casino, there aren't kids, and at that time of the night, people are either asleep or down stairs gambling, and why our room???
Needless to say, I did not get much sleep. Between the damned knocking, and my feet itching and burning… by 4:30 (my usual wake up time) I was up and trying to get a bit of coffee down me (which their coffee thing in the room sucks)… so we could go down to find breakfast. That was another thing. The Casino built another HUGE buffet. BUT, they actually closed the other one, which they need both. And the new one does NOT serve breakfast at all. Yet, not one soul in the casino could tell me where they serve breakfast! It was nuts. So, we went down and decided to just check out, get the car, put our bags in it, and then drive around to play. Well, low and behold, right across from the registration desk is a brand new restaurant, and a very nice one, with linen napkins and the whole nine yards. In fact I think one of the glass pieces they had was a "Chihuly" piece, and it was totally amazing! Anyway, we had a wonderful breakfast, I got the car, and we drove back around to the front of the casino where it was closer for us to get into it, and then leave when we got ready. The Hotel is SO FAR away from the front entrances of the casino, it takes something like 15 minutes just to walk back to it. Thus moving the car is definitely a must.
The other "odd" thing that happened was just terribly weird. Mom and I were playing and I turned around to see where the nearest place was to get a drink. I noticed two or three of the main casino guys that are on the floor to help with machines etc if something goes wrong. They were standing around this man, who had been playing on a machine to the right of me, across the way. They were really having one "serious" conversation it appeared, so I figured maybe the machine grabbed his ticket, or something like that. In fact, after I got up, got us some tea and came back, my machine "fouled" out and took my ticket and would not play either. I waited almost 45 minutes for someone to come fix it and that was after asking 4 times. Anyway, after these men talked to the guy playing for awhile, I noticed a "security guard" standing right there by this guy. He kept on playing and appeared to be the same machine, but that security guard did not leave his side. I even asked him if he could get someone to come help me, and the entire time the guy kept playing, but that guard stayed there. That was very strange. I never did figure it out. Anyway, just odd for sure.

We had again got over to the Casino EARLY by about 7:30 or a little after, so by 1:00 pm, I knew I had a drive ahead of me to come home, so I was about ready to leave. LOL, I think Mom would have stayed if I had said let's stay, but she does when she is NOT losing, and she is winning a little …:)

So, we walked past the "high rollers" room, one of several they have. This one is mainly $5.00 and $1.00 slots, and of course they have others with the $10.00 and up. Anyway, she wanted to go in and look around, so we did. She decided she wanted us to put a hundred dollar bill in one of the dollar ones and play it! So, we did. We played on several of the slots in that bank of dollar ones. She had so much fun doing that. LOL, of course we were not fortunate to win, but it was cool to watch her have a great time.

We left after that, and traffic was a bit heavy through Dallas, but we made it home without a scratch. I was glad to be home, and my two dogs were just so happy! They just would not leave my side. I was glad to see them and Jim. I had missed him and hated he did not get to go with us this time. He usually does, but he still has the neck and shoulder ordeal bothering him, plus he is trying to catch up on work also, so he decided to stay home this time.

Anyway, that was my Sunday and Monday, and it was good to get away; although when I get home, then I feel like I've been gone a month! It seems I am SO FAR BEHIND… with online stuff, my volunteer stuff, my blog, email, doing laundry, cleaning house and it never ends… and then I have not been to the market for my "monthly huge" bill of groceries, so I have got to get coupons in order to do that. I am so far behind on my "stockpile"! It sucks!!!!!

Also, one other thing. I may have mentioned my "lump" on my left lower abdomen several times. But, as I said, my brain fog is bad today. My brain is trying to swirl and take in about a million things I need to do, and I just can't get it all straight. I went of course to the PA, a sonogram, a Gynecologist, then back to the other PA in my PCP's office. She, the last PA, FINALLY found out I do have two hernia's… yes not just ONE, but TWO of them!!! The left one of course is what sent me to be looked at. Honestly, I really thought it might be a tumor. I have "stomach cancer and colon cancer" in the family, so I was kind of concerned. Then when the sonogram showed nothing, honestly it concerned me more! I have to see a surgeon and was supposed to go tomorrow. But, I am postponing it until next week. I've got so much to catch up with, and I can see him here in town on a Monday or FRiday, rather than having to travel out of town, which takes more of a day up. So, as I find out what the deal it I will let you know…

Okay, other than I am SORE, TIRED, and BRAIN DEAD… I am happy Mom and I spent the time together…

I'll get my head back on straight in a day or two…:)

Rhia


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