RA, Lupus, Sjogren's - New Symptoms? another Illness? and even the thrill of "Good Stress" can cause a flare...

Life continues to buzz by faster than a speeding bullet, and faster than a rocket. I hoped 2015 would begin anew, and slow down a bit to allow me a breath or two. After 2014, and ALL that I, along with family went through, my main hope for 2015 was to be more "well" physically, mentally and emotionally. I hoped life would "slow down" to a bit more of a sprint, rather than an all out marathon race, and with that would also come a bit of respit from so many bills, my teeth, Jim's accident, attorney's stuff, going to all of the doctors, and again we could see the light of dawn, after such a black ink darkness of the past year.

It's not that things have been "bad" as of yet. Although the first of every year brings another set of stressors many of us have to deal with. If you own a home or property, like myself, you probably owe property taxes by the end of January. Like many, my house insurance is usually due about that same time, along with income tax filing for many, worrying about a brand new insurance for my Mom and myself (we changed from Humana Medicare Advantage over to United HealthCare HMO Medicare Advantage plan)... and I knew there would possibly be a few kinks in the entire change especially for me, since I have so many medications to have filled. Of course all of that had been resolved with Humana over the several years I had it. In fact, I guess I had Humana from 2006 forward up until this new year 2015. I had finally narrowed down most of their stupid hoops that myself and my doctors had to jump through. So, as I knew I am having to go through a few red tape situations in order to get my medications refilled.

I am also dealing with something involving my stomach. I am not sure exactly what the issue is. I realize that all of the medications I must take daily, does not help at all. Yet, I've been taking the majority of them for years now, and as long as I take my Meclazine for the vertigo issues, I rarely had severe nausea issues. Over the past 5 or 6 months, it seems I am nauseated more than not. I am even taking Promethazine and now having to take it daily. Part of it, I am sure is stress. Stress over my own illnesses, medications, bills, and what needs to be done. Stress over Jim's health situation and knowing there maybe many things we come to have to realize that he will never be able to do again. A piece of me truly thinks that many things like driving, walking a long distance with just the cane, doing most things are the house chores, especially anything to do with finishing up the remodeling, laying floors, painting and so on. His balance is still so "off" that there is no way he can stand on a ladder what so ever. He can't keep his balance for very long at a time now. As much as I want to believe it will get better this year more; since it will be a year in March on the 26th since the wreck happened, I just don't think that any more time will make him any better doing some things. As we have both learned since his accident, balance is almost more important to "life" and what you do every day, than walking, running, picking things up, getting on ladders, bending over. Even riding our exerciser which is kind of an "eliptical" one, we saw immediately it was his balance that really through him off to the place I have to stand beside him in order for him to ride it. So, strength at times is not as huge of an issue is the balance situation is.

Along with this almost daily nausea I am having, also comes a fatigue that can at times be worse than my experience with it through the years since being diagnosed with RA, Lupus and so forth. For about 2 or 3 years I didn't sleep much at all. I was up and wide awake by 4 am at the latest. Then all of a sudden, and we are staying up a bit later, but here lately I am not waking up until 7:30 am most mornings. So, I continually feel I am running behind. When I was getting up several hours earlier I could get more accomplished. Now, by the time I am up, and turn around it is 2 or 3 pm. The days just seem to be going by even faster than last year. I also know that with the RA, Lupus, Sjogren's and so on down the list of my health issues, my stomach issues could be taken as a part of those. Severe headache, nausea, the fatigue... the muscle pain, and joint pain, all sign and symptoms of most autoimmune diseases.

Yet, you know how you feel at times when you just "KNOW" something else is going on. I can't explain it, but whatever is going on now, seems to be "different" than the symptoms of what I've been diagnosed with.

For one thing, I've had an "extra" beat with my heart now for a long time. I never really was concerned about it. My cardiologist knows, and she has me on medication that keeps it under control. But, a few days back, I had a new type of happening. It was like my heart would be fine one moment, then it wants or feels like it runs really fast for about 4 beats, and then goes back to "normal"... it happened through out the day one day last week. In fact I was so concerned about it, I had called my doctor. She could have see me the next day. Then I woke up with the most severe headache, and fatigue, with the nausea so bad, I had to postpone the appointment. I actually have one with her on the 13th of this month, so I decided to wait until then, unless it happens again before my appointment.

I had came across a story about a woman that was born with a heart defect. They found it when she was 3 months old. For many years, it was under control with medication. When she was in college she began to have problems with it, and later when she was about 39 years old, had to have a heart transplant. It was truly an inspiring story, yet some of her symptoms that she had really blown off as nothing were exactly the same thing I've been feeling. The severe fatigue, she was having bad headaches, and being very nauseated, plus noticed shortness of breath. Well, I had been noticing over the past few months that I complain about sometimes feeling like I am short of breath. I also passed it off as nothing, until I read her story. Now, the one reason I would think it could be heart related is for one, all of the AI illnesses can effect the heart. Two, I have had two heart attacks already. So, that kind of caught my attention, as I was trying to piece the puzzle together as to what is going on with me. Honestly, I have preferred to ignore it. So, other than some "Google" research, I have tried to put it out of my head.

There are way too many things on the agenda I need to attend to, and having some type of heart issue, is NOT what I want to deal with at all. Of course, I realize no one wants to think they might have something going on with their heart. But, what I do have to face, is that statistically I am more likely to have problems, than those without AI illnesses, and/or that have not had 2 MI's already.

Of course, I've received the honor of being able to travel back to Washington D.C. in March, for the "Summit on the Hill". The Arthritis Foundations Annual Event, where we go in as patients or patients families, and tell our Congress People about our stories, and what we want to see accomplished to help those out there like us, that may not be able to actually tell theirs like that. I went through the whole year last year and made "Platinum Ambassador". So, that gives me the opportunity to get the "grant" from the Foundation that pays for my flight, lodging and just about everything other than "personal items". So, that being said, and also as I began this, I am totally elated at the honor of getting to go back again this year. Yet, it brings on a whole new agenda of "good stress", honestly. I've got to be concerned about driving my own self to DFW, which is about 65 miles or so from my home town. Parking in long term parking, getting myself to the proper place for my ticket, going through all of that nightmare, and then getting to DC in time for Monday mornings first meeting, which is at 10:30 am. So, thankfully I do get to fly in on Sunday!!! They confirmed they would cover an additional day for me to come in, since I am flying from a fairly long distance away. But, even with that, trying to pack where hopefully I won't have to check a bag, getting their, settled in, and then having to fly out on Tuesday evening, AFTER our last part of the day on Tuesday. So, again that makes for a very long flight home, getting into the airport back in Dallas very late. Then driving myself back home in the wee hours of the morning from DFW. Fortunately, maybe traffic won't hinder me either way.

I've also got the "stress" about my birthday on the 15th of February. Of course it is much better to at least "look forward" to having one, rather than NOT looking forward to it. Yet, to know I will turn 55 years old in just a couple of weeks really terrifies the hell out of me. As my Mom and I just talking about it. How quickly the years have seemed to pass by. How it seems like just yesterday my kids were born, or I was little and having my birthday parties, and all of those years of youth have just melted away like a molten river of lava down a steep hillside.

We (meaning I) at times became complacent in life. I guess in our younger years, we are so entirely engrossed in jobs, school, college, kids, homes, bills... and everything we incur and that occurs during our robust years of a more youthful time in life. So, we turn around once, look in the mirror to see a young adult making their way through this place we call the world. As we make another turn, it seems the decades have past us by all too quickly. Then if you happened to have came into a life of some type of chronic illness, whether it be cancer, or an autoimmune illness, heart problems, diabetes, and many other conditions that can crop up in the blink of an eye, we begin to want to look back at what "we" did or did not do to cause this. Then all of a sudden, classmates we graduated with lose parents, or worse the classmates pass away. Nothing "stings" quite as badly, as finding out someone who is YOUR age suddenly has gone to be with others in heaven. That one can really stab you where it hurts. It is definitely a wake up call.

So, with all of that comes the "what ifs".... what if I had not married and went onto nursing school? What if I had completely finished my 4 year college degree? What if I had stayed in California, or Seattle? If I "had" or "had not" done certain things, would I not be suffering from the ties of disease that bind me now?

I find myself with way too many questions in life, alas not nearly enough answers for them. I feel often "less than" because I honestly don't have the energy and stamina to "do more", "be more", participate more. What if I could still go snow skiing, on more trips and vacations, and was not so tied to the strings and arrows of chronic pain and illness?

Then I actually witness someone more than likely as ill or if not even more chronically ill than I am, and it appears they can get more done. They do have the stamina, strength, energy and wear with all to withstand and write best selling books, or poems. Or they do much more in their activist advocacy activities.

I have PROMISED MYSELF, and to my very BEST that I CAN do INTEND on completely finishing my BOOK by the end of the year and having it published. That is where I stand, and my stance is. If that means "robbing spoons" from other daily things I do, then I need to learn to manage my time wisely. Putting MORE of my "spoons" into the writing of the book, and taking some time away from things such as Facebook, plus other items I tend to do, rather than writing.

I WILL always be posting here... and never will I allow myself NOT to continue my blog. It is truly my LIFELINE to ALL OF YOU! And it is for ALL OF YOU that I WRITE THIS NEXT BOOK!!! For myself also, but more for all of those out there struggling through the mysteries of life, and the good, bad, really bad and depending on someone to help guide them through the darkness of despair over chronic pain and illness.

You see, it is NOT just our physical bodies that are so terribly effected by these chronic diseases. It is the very core of our being, our hearts, minds, soul, family, spouses and friends... so it is a journey that is to terribly long and difficult to deal with to feel alone in doing it.

So, today... I dedicate each page of the book I am writing to YOU!!!!

New Year - New Revelations - New "lease" on Life, still all wrapped up in an Autoimmune Illness World and How to make dreams come true...

I have under my own terms "swore off" procrastinating about the writing of my 3rd and in fact 4th book. I had a very good email come in this morning from "Create A Space" that had an article about how to "put off" the writing of a book. We can make up a thousand and one excuses, especially if you a chronically ill, or like myself chronically ill, dealing with some symptoms that can really make daily life a challenge. To top that off, now I am kind of the "whole deal" of being a care taker for myself and for Jim. Even though within a short couple of months it will be a year since that fateful car accident, that sent me reeling through a "time space" that still I am not so sure of how I got through it all.

Honestly, I am not sure I truly have resolved all of it in my own head, heart, and soul. I question my own illnesses, and as of late, have developed more symptoms, that truly have started to concern me. I am not so sure that they are from the autoimmune illnesses, I am already diagnosed with. I have this "gut" feeling... that my "gut" feeling (n pun intended), along with the nausea, the extreme fatigue, all of the lower back pain, leg pain, of which even woke up me at 4 am this morning, and sent me rushing to get some medication, and then even though I really wanted to get up early, I remained on my sofa bed until about 7:40 a.m. That had not been my normal behavior for the many months that followed Jim's car accident. I rarely slept. Some days I wished I could go "find" those nights and use them to further the writing of my books.

I am trying to properly place myself where I desperately need to be in order to get this book written by the end of the year. Yet, if I don't heed the advice that I read just this morning by a group of very good writers, I will continue to "put off" the book and never get it written.

So, over the next few months, I will definitely keep my blog "fresh". I won't allow myself not to publish things and write events and so forth here. You, my audience is extremely important to me. So, the last thing I want to do is lose you due to me not posting and keeping current information here, because eventually my heart tells me some of you will be the "audience" that helps my 3rd book to take off enough that I can give a good portion of those proceeds to a couple of very important charity/non-profit organizations that I feel are crucial to the findings about everything autoimmune. From the very beginnings, to the fight going on admist researchers, grant money, patient and clinical trials, standing up to our Congress both state and national to get them involved in such a crucial matter to all of us here in the USA, and the incredible work of those in many of these non-profits who are no longer just "charity" organizations.

They are SO MUCH MORE than "charity" types of businesses. They are the very operatives that go in "fighting" for us as patients, as caretakers, as family members dealing with these illnesses, and to get the funding needed to battle, and win the raging war over how the ruthless diseases destroy so many lives. Whether through loss of jobs, family problems, endless medication and doctor bills, fighting with insurance companies, pharmacies, and the list is endless of the daily ordeals we go through to try and "get well"... or at least feel better, find remission, and a state of "no more disease" to have to contend with.

I promise to do my very best to keep this blog fresh, full of new posts and information while I dig much deeper inside of my own heart, brain and soul to complete this 3rd book. And I know beyond a shadow of a doubt, I WILL accomplish that.

The Movie "Cake" Comes Out and Receives Reviews - I feel Jennifer Aniston Brings Light to Chronic Pain Patients

I noticed several "not so great" reviews of the movie. None of them were really putting down Jennifer Aniston and her role that she played, but moreover it seemed like the critics viewed the script as being "watered down" from its original writing. I believe originally it must have went out on a limb even further to depict the life that so many of us totally understand. This is NOT some fairy tale, or some kind of "mystery novel", or just another movie. It is depicting a very true sense of what any and all of us have been through chronic pain and/or chronic illness have in our own reality, daily. We live this over and over again. The pain, the anger, the place and time we want to throw in the towel, give up, and say NO MORE! 

Anyone who goes through pain such as this nagging, agitating, never ending, daily, grinding, aching, stabbing, just RAW type of something you know you may have to continue to live with day after day, month after month, year after year.... there comes a place for many of us, that we must stand back, and kind of "observe" what is happening to us. You add in the amount of stress, of trying to hold it together for a job, for a family, a spouse, or for the world "outside". 
No one ever wants to appear "weak"... and some where down the line, we have had hammered into our brains, thoughts, and reality that showing "pain" in any form is a true sign of weakness, of not being able to weather the storm, of being someone "less than", and rather than be draped in understanding and help, we wind up totally alone, all of our friends and family suddenly disappear, and we seem to be just a heap of flesh and bone, that others can't deal with. 
You will find in your own walk with pain, that others, whether it be family, a spouse, close friends, even your doctors and medical professionals want to "shed" themselves of you. The idea that they have to watch "you" in such pain, brings them to think about their own life, and they almost act as if "pain" is contagious. You are carrying something around they can "catch" like the flu or a cold, so they shun you. 

I've had to deal with physicians back over 20 years ago, when I began having migraines. At that period of time & even to this modern day of medicine, some physicians have this "ideology"  that "women" are complainers. Either they want to blame our pain and illness on "stress" or another huge one was "depression", or that it is "hormones", and many often just wanted to press that the female gender were more likely to use "pain" as a crutch. I've even on more than one occasion dealt with physicians that actually believed I was just some woman looking for "drugs" rather than the reality I was in horrid pain. 
Men as a whole, have always been taken more seriously when it comes to pain. If two people, one a woman, and one a man, came into the emergency room complaining of severe pain, you used to be able to bet the man would get "treatment" not only more quickly, but probably medication and help that would be able to help with the pain. The woman on the other hand maybe sent away, with some kind of excuse, and told to see their doctors the next day and so forth. 
Things have changed somewhat in the past 10 to 12 years, and we as the female species tend to be taken more seriously when it comes to pain. I can recall the day I drove myself to the ER, having a heart attack, in pain. and they actually took me seriously. 

Yet, I had been to that exact same ER on many occasions before that with a severe, intractable migraine, and depending on which physician was on duty at that moment, it was a crap shoot as to whether I would receive the proper treatment, or be a "guinea pig" for something I knew would not work, and then sent home without the help I needed. In the years from about the age of 21 through my early 40's I watched this happen again and again. Whether it was the ER, my doctors office, or a clinic, I never quite knew how I would be treated. Like I said above, I had been given just about every crack pot diagnosis there was because of being female. I am sure many doctors out there will deny that, and most of them are probably now retired or have passed away. Yet, I've ran into the exact same mind set recently. You can guarantee, with the ongoing health issues I have now, if I get even a "hint" of being put off, or not taken seriously about my health problems , I am out of that office, down the road and looking for a new physician. 
I've learned no one has to take being treated as if they are not telling the truth, or not being taken seriously. 

I've had to learn the lesson that physicians' are also humans. They have been looked upon as some "special species" that make no mistakes, everything they tel us we should take to heart very seriously, and that you NEVER not do as your doctors advise. I am here to tell you, doctors are not PERFECT. The "advice" they give us as patients is "advice". Just because a physician recommends a certain test, treatment, medication or a specialist, does NOT mean you must bow down like he is the "Lord" himself and rush off without questioning the reasons behind what he or she is doing. You, as the patient, have MANY rights. First of all, you have the right to be treated as an intelligent human, with either symptoms you are concerned about, or a chronic illness or pain that you are there to follow up on. You have all the rights that are in the "Patients Bill of Rights" to ask every question you wish. If it is about a medication, and you feel it may not for one reason or the other be something you need to take, then question why that drug is important. If there are tests to be done that your medical professional is "suggesting", whether lab work, nerve conduction studies, X-Rays, MRI's, CT Scans, and many others, you have the absolute freedom to ask why that particular test is being performed. What will it help to either show, if anything is wrong, and if you have recently been through the "exact same" type of test within a few months of one another, then you SHOULD be asking them what is the importance of doing a procedure you just did a few months back.

It stands as a well known fact these days, that "specialists" all too often want to have "their own" procedures, testing, labs done. Even though another physician may have just done all of the exact things a month or two ago, there is this "code" some doctors have that rather than look at whats already just been done, and work from there, it seems another "new" set of tests performed by their "preference" of labs, techs, and so on may be able to do it better; more efficiently, or possibly the others missed something when they did the test a month ago. I can almost guarantee under most circumstances there will be nothing different. Unless you have some type of health issue, such as cancer, or blood clots, or some other very fast moving type of medical problem, those tests that were performed a month or three months ago, will be the same. 
Tried and true this happens for a couple of reasons. First of all, doctors, especially "Specialist" tend to be arrogant, and feel they do the "best" surgery, best diagnosing; they are "best" at everything. So, never would someone that highly educated and knowledgeable take the word from another physician or whomever did their testing. Or it is something much more tangible than their ego. It is their "hip-pockets." Doctors, especially those in very highly specialized fields DO get "perks" from certain labs, MRI companies, certain pharmaceutical companies, from those highly regarded business that make medical equipment, such as pain pumps, knee and joint prostheses, and others. 

Now the first things that may jump into your head is that physicians cannot take "bribes", or money from "any" business such as that. Plus, they are not supposed to "favor" one company over the other when it comes to medications, medical equipment, and so on. Yet, how many times have you set in your physicians office, and the pharmaceutical representatives are there. Either they get to go back while you are sitting there waiting on your own appointment. Or they drop off "goodies", possibly even samples of medications. I know for a fact one of my Orthopedic Surgeons was taken out to dinners, or given other items of use, because he was using their prosthesis, over another company's. Now, it is NOT against a code of moral ethics for a physician to go out and dine with these representatives, or get pens, pencils, all kinds of office supplies from them, and accept certain types of goodies brought in for holidays and so on. But, of course it is certainly illegal on a moral, ethical, and the law side of money to change hands or preferential treatment from entities such as these. Then again, sometimes you have to wonder where some doctors get the money to drive very expensive vehicles, unless they are like the so-called "Opthamological Surgeon Specialist" that turned out to be the biggest ass, and the outstanding "quack" I've ever had the chance to see. NEVER, and I mean NEVER will I, or anyone I can convince NOT to see this so called eye specialist. He was as far as I'm concerned gone out of his mind. All the while he was raking in the money. When you can have an office of more than 50 personnel, and your "office" takes up an entire floor in an office building in Dallas, plus the staff was almost choreographed to play their roles in what seemed more like a "movie production" than a specialists office, you had better turn, run and never look back. 

So, all that said, I feel this movie and I hope more to come in the near future will truly bring out the very "real" challenges patients chronically ill and/or with chronic pain go through to get the help they need. For the most part, I know speaking for myself, I am flying by the "seat of my pants" when it comes to new symptoms that concern me, which physician should I go to for a particular new symptom, or should I first do enough of my own research to help speed up the process of me feeling better. Changes are fairly good, that I am better off trying to research my own symptoms, changes, differences that I'm experiencing BEFORE traipsing down to my doctors office. For one, I feel if I don't go well prepared, with a list of symptoms, and some information about what research I've done to possibly explain what is happening; I wind up not getting my "dime's worth" into my physician, he mumbles a few sentences, listens to my heart and lungs, and then off into the wild blue yonder he flies out, leaving me more confused than when I came in, with some "new" medication that is probably not going to be helpful, and I am as just in the dark as before, but worse. Again I've had my physician NOT listen, NOT hear, and NOT diagnose my problem. I go home upset, mad, and ready to rip someone's head off (not literally), because I feel cheated by the medical system again. 

I happen to be fortunate enough for the moment, because it can change in any given time frame of having a Primary Care Physician (PCP) that is young enough, extremely intelligent enough, and likes the fact that I DO research first, then bring what I feel maybe useful to him in order to find out what is going on with me. So, he LIKES informed patients. My Rheumatologist is definitely the same, if not more so. He LOVES the fact I have done research on medications, on the RA, paid attention and written notes about my symptoms, and come in as well informed patient, that can understand exactly what he is suggesting. Often times when I bring something in, say about new medications. More times that not will he be on the same page as I am. I leave there with what I felt might be the answer. And he seems grateful to have a patient willing to keep tract and give him as much information as I can. It is a win-win situation for both physician and patient. 

So, as I close this "chapter" even though I have only seem the "trailers" of Cake so far, I believe it is a giant step forward in the progress of educating everyone about chronic pain and chronic illnesses. It is a look into the human soul and just what a toll these illnesses take on us. My hopes are this movie will open the doors in Hollywood and be the start of something much bigger. If this film and others that could follow can help to educate all of us, to understand that something "chronic" means just that. It is "here" to stay, each moment, each minute, each hour, day, year and beyond with us. So, those that live with these many costly illnesses, the toll it takes on making some of us no longer able to do our jobs, take care of families, have our own "normalcy" of like back, and the cost on our nation alone in medical bills and lost wages. "Chronic Pain" all too often completely destroys the quality of life for the patient, spouses, and families, causing divorces, and destroys what many of us have built our life upon. 

My hopes are that you also will see the movie, and respond to it. We should let it be known that this should be the start of a much larger look into more and more "true to life" film portraying a life "taken" over by pain and suffering. 

 p.s. by the way the CEO of the Arthritis Foundation has endorsed this film and has told her feelings about it depicting all that patients deal with.
 

Arthritis Foundation - 2015 Annual Summit on the Hill in Washingon D.C.!!!!

Registration is open for our annual advocacy summit! Join Arthritis Foundation staff & other advocates on Capitol Hill to meet with legislators & tell Congress that ignoring arthritis is unacceptable & more needs to be done for people with arthritis! Registration is free. Details here: http://www.arthritis.org/advocate/advocacy-summit/

 

I am so TOTALLY THRILLED to be going back to Washington D.C. on March 24th through the 26th for the "Annual Summit on the Hill" - Time is already flying by so quickly. Thank Goodness I already have a pair of awesome boots to walk in... they are so comfortable and have a lower heel on them than my others! Plus I have a brand new longer jacket that should be very warm for the days there...LOL.. my luck, last year I felt I was not as well prepared for the cold, rainy, snow filled weather. So this year I made sure to try and be more prepared. I even had to buy another pair of gloves! I lost one of my green ones somewhere between the Capitol and the Hotel on our last day there. I loved those, but I have a new pair of red ones that are awesome also. Plus I am more aware of what to wear when, and the entire routine! This is going to be an astronomical year I feel in my bones for a headway forward into the places of lessening flares, possibly preventing flares, putting more of us into a remission, or help the spread of these diseases... I think as all of the leaders in the non-profit world of Arthritis, including RA and JRA, along with strides made in other autoimmune related illnesses, we shall see greatness.... I urge you to sign up to be an "e-advocate", because YOUR VOICE matters!!!! Hope to see you there!

"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.....