Giving a "Voice" to All of the Frustration of Being Chronically Ill Human Being...

I believe the very first thing I want to point out is in the "title" of this blog post. That is the two words, "Human Being". None of us are robots, although as of late, many act like it. None of us are beyond mistakes, stresses, illness, economic woes, job losses, kid issues, family problems, and an entire gamut of "what could" and does happen to "good" people. When I say "good" people, I am speaking of us main stream normal everyday folks, that try our best to do our jobs, take care of our bills, raise a family, and be a "stand up" kind of person, who wants what is best for all. We don't begrudge others a nice life, a good vehicle, health for them and their families, and the ability have have what is considered a "quality of Life" we feel is truly worth living.

All of that sounds very simple. Life.. used to be "simple". I know what some will say to my next statement, "life seemed a great deal more simple, when we did not have but a one room school house, raised our own food and animals, got our milk directly from the source, had the "ice" man delivery the "ice" block for your ice box, had a radio NOT a TV, not the internet, not fast cars, cell phones, video games, and back when kids went outside to play. When kids played then, even in my life, I went out to "use" my imagination to occupy time. I was an only child, thus I spent Summers outside, with my dollar, my little table, making up all kinds of different things that kept me out in fresh air, active, and not sitting in front of a television for 12 or more hours a day. I can see now "hind sight being what it is...20-20" many things that are contributing factors to all of our "hardships", our downfalls, our chronic illnesses, whether emotional, mental or physical that we want to shove under the rug, run to the doctor, take a quick pill, much like running through the "drive-thru" for coffee, we are too lazy to park, get out of the car, and go into a place to get coffee anymore.. our excuse?? We are TOO busy! Well, if you are TOO busy to go inside and buy your lunch, get a donut, pick up a six pack of beer (now that you can even drive thru for freaking beer), then I say you are TOO DAMNED BUSY!
All of the above seems to not have much to do with what the title of this post is, nor does it seem any of it relevant to chronic illness and chronic pain. But, it is all relevant. Our entire lives have evolved, in good ways, I will not say that all we have accomplished is "bad". But, we have also "engineered" ourselves right out of jobs, "automated" our lives into a never stopping conveyor belt of high prices, lower quality items, food that is "tainted", medications that are "tainted", people that are not willing to get up off their butts and do their jobs. If they can't sit behind a desk and be "boss", then they think the job is "beneath" them. Boy, you cannot tell me you do not know those like that. I have met several in my life time so far, and it gets worse everyday.
We will not accept that WE HUMANS HAVE RUINED OUR WATER, AIR, AND LAND!!! WE have MELTED THE POLAR CAPS. WE have CAUSED CANCERS, HEART ATTACKS, AND STRESS THAT SEND PEOPLE RUNNING TO THE NUT HOUSE! Or "self-medicating"... how many do you know that weekly, daily use alcohol, food, TV, video games, being on line in a social media place, possibly other drugs that are not "legal", sex, shopping, spending more money than they make... and the list goes on and on... of ADDICTIONS! We totally rely on so many addictions, whether to food, spending, or alcohol to "prop" ourselves up daily so we can do it all over again in this rat race we call life.
We will bitch, moan, whine, and stomp our feet, of things we do NOT believe are RIGHT! BUT, take action?? IF you can gripe about it, then you can DO SOMETHING! Write an email, a letter, make a phone call, attend a rally... do something other than give these things "lip service". I can tell you right now WORDS with NO ACTIONS, gets you NOTHING BUT FURTHER UPSET AND STRESS! It only leads to more frustration, more depression, more attitude of giving up and throwing in the dish towel of life. So, why are we so in "fear" of voicing how we feel???
What makes us rant and rave "online", but come up to the person, or place, or thing that is upsetting you, and lips are closed, mouth shut, and a "pleasant" face put on... in other words DO NOT rock the BOAT!!! Why??? FEAR???? Have WE as a society that is supposed to be the MOST DEMOCRATIC (I get to where I despise that word... we need a "new" word for those that can give "voice" to their opinions and thoughts, without feeling like you have to "apologize" for what you have done or said. As long as you are NOT HARMING YOUR NEIGHBOR, or causing misery for someone else, you SHOULD BE ABLE TO STAND UP AND SAY HOW YOU FEEL! You should not feel as if your friends, family, doctors, other professionals, anyone is going to "stop" seeing you, not take care of you, no longer "fill" your medications... just because you may not "see" something the same way that another does. WHY are we SO ASHAMED of our own thoughts and feelings.?

We live in enough fear of terrorists, of bombs, of those that shoot people for no reason, of the insanity that happens here daily... we are fighting wild fires,, droughts, and ALL OF THE MOTHER NATURE EVENTS that if we look back in history, MAN CREATED HIS OWN DEMISE. We have ignored our Earth way too long. We have ignored polluting it, of using it up, of covering it up with concrete; then all we can do is "finger point" to who did it? ALL of us! Each and everyone of us are contributors to our own realms of waste, pollution, of the demise of the medical profession, of the demise of our own government. We can bitch all we want to, but WE PUT THEM IN OFFICE! If it is broke, FIX IT! Sometimes the well just runs dry and you have to freaking drill for a new one. And this "well" for our government is dry and getting drier daily.

Ignorance is NOT bliss! It is just plain ignorance. And "denying" all of what is happening, is just sticking your head in the sand and watching for the other shoe to drop on it.

Now onto the "REAL REASON" I am writing this morning... As you can tell, if you are following me here, or on Facebook, my life, as well as my family's life has been in a freaking turmoil now for more than weeks, let's try months. Since January of this year, thank goodness for my spouse, and my Mom, and all of those out there that are "rooting" for my side of the ball game.
I began with what seemed like the "flu". Made sense. After all it was "flu" season. Yet, each day, rather than get better, I seemed to be worse. I began to have pain, and it got worse with each passing day. I developed worse fatigue, muscle aches, deep down in the bone pain, in my legs, my feet, my ankles, hips, and lower back. I was so extremely fatigued, that for weeks, I was literally not able to even drag myself around my drive way to walk, water my flowers, hell I could not even sit at my computer. I went to my regular doctor, my pain doctor, to a neurologist, in fact 3 of them... and had every kind of blood test, EMG, NCS, CT Scans... all coming up with "something" small, that may have "contributed" to the pain, etc... nothing that should cause such massive pain, massive fatigue, and make me feel like I had been just ran over by a bus once or twice. We even questioned my pain pump and went so far as to have the medication completely removed flushed and put new medication back in.
this was already mid-February. We did not know where else to go. I had a couple of doctors that gave me a "new diagnosis". One of which was "myasthenia gravis", and they even suspected Multiple Sclerosis, of which had been suspected on several occasions. This went on until about the first of March. Then one morning, I woke up, and all of the "symptoms" seemed somewhat "better"...  each day thereafter it seemed to have a bit better feeling. We never put our finger on the reason why. so in essence I think myself, mu spouse, the doctors "chalked" it up to the "Lupus" and a very bad flare... and the RA, of which the meds were not working as well as they should be... plus I probably did have the flu, and all of it caused that "perfect storm" of illness that raged through my body. What I never did really think about, is in the meantime my pain doctor had "upped" my pain medication when all of the stuff began, and he left it like that. So, possibly I was of course better, other symptoms were going away, but the "pain" could have been somewhat masked over by the increase (change) of pain medication. I got "better", yet I really never got "well". I had other health issues come up, a "myoglobin" issue, that would be a contributor to muscle pain, the RA of course, of which the Humira was definitely not working as it should have been, plus several other things like finding out I had radiculopathy issues, and my lower lumbar spine had definitely done some deterioration in midst all of. Any and all of those things could be combined with my Chronic Lupus/RA issues, to be the culprit of my ongoing new type of pain/illness issues.
Well, the boat seemed to rock a little and put me back in whatever I want to "think" is kind of "normal" for my life. Yet, that was NOT to last long. Come about Mother's Day. I recall it being close to then because I and my Mom were planning to go to the Casino to spend the night. On that Friday before I began to just feel lousy. Again fatigue set in and almost simultaneously, the pain I had so hoped would not return was back with a vengeance. I was definitely in no shape to make even a 2 hour trip to have a good time for Mother's Day, so we decided to postpone and go the following weekend. Well, by then things were already worse. Again, the severe and deep bone pain, in my hips. legs, feet ankles wrists... it was all back once more. This time I went straight to my PCP, getting prednisone injections and a 14 day step down of it, and having them do what they could to "stop" again what we thought was a very bad flare. From there I have battled everything from several of my teeth needing to be pulled all of a sudden, to several cavities, to the double vision I have been fighting for over a year (not one doctor, even the best "neuro-opthamologist") ever figured out why my vision is double., to the excruciating pain I was and this time again it required not only an increase of my oral "break through" meds, BUT an increase of the medication that is in my pain pump. I have spent week and weeks, almost crawling at times around my house, not feeling like even baking something. I have been to my orthopedic surgeon who injected both hips and both elbows that were giving me heck. He feels that my thumbs are too deteriorated to even put medication in, and my hips, and elbows also show signs of further deterioration, which could cause the pain in my legs, hips, lower back, feet and so forth. I am continuing the battle with my own health issues, then week before last I got not only just slapped in the face with, but knocked down with a "suddenly very Odd" "certified letter" from our own Primary Care Doctor. Now this man is wonderful. He diagnosed my Lupus. He had been the doctor who found much of what was going on with me and had been working to "fix" what he could, and sent me to other doctors to do other things to help me feel as well as I possibly could, under my chronic health issues.
This "letter" came while I happened to be at my Mom's and my husband got it. In fact it was for my husband. When I got home, I stepped out to speak with him on our front porch and I could tell by the look on his face, something was very wrong. I had not been gone long, so of course, I was "in a panic" wondering if something happened to one of the dogs, or he had gotten a phone call with bad news. When he began to tell me about this letter, a certified letter he received in the mail, I asked him what he had won? Then I abruptly saw and heard that this was no joke, that this was a serious situation, and after he finished, I had to read the letter and see with my own eyes what he had told me.
It was very formally addressed to him, as if a "stranger" had written it. Yet, this certainly was not a "stranger" at all. This was OUR FAMILY PHYSICIAN that had been our doctor now for at least 6 years. For me, a little longer, because I went to him first. In fact I was probably one of his first 15 patients. He had not been in practice very long at all when I felt like I had found the "perfect march" as far as a family practitioner. Not only did he have an incredible "bedside manner", he is intelligent, he was way educated much more than the usual family doctor, because he tested me and found out things about my health issues that not one doctor in 40 plus years had been able to find.
My Mom was also looking for a new PCP. Her previous one was old, and going out of business basically, so I suggested my new one to her also. She went and also was very pleased. He seemed to be right on top of the latest and greatest. At first, he did it all. There was not any of this referring you to 15 doctors. He tested, found out what was wrong, and with "your" help as an "educated" patient (another big plus in my book, he loved educated patients), he would treat you himself, if possible without sending you all over the country. Again, a small town, with very few PCP in it all the years I was here, this doctor was like an angel sent from above. Things rocked along, and my husband began having issues with his lower back. He does not have insurance. Thus he would be a "cash" pay patient for awhile, until we could afford some kind of policy. But, this new doctor seemed to be much more concerned about "patients" than money, and he charged a very nominal charge to see my husband, he also tried to keep tests, scans, and expensive things out of the picture unless absolutely necessary. So, when my husbands back began to give him more problems other than just the usual three or four times a year, this doctor did a few Xrays, determined the situation was probably something he was born with, and as the years went by, arthritis, and a narrowing of the spinal canal was putting pressure on the main nerves in the lower spine, thus causing horrid pain off and on. Again, we were very impressed. He tried several different types of medications, also treated him for blood pressure issues later, and High cholestral problems, and we were ticking right along, no problems. In fact I had highly recommended him to anyone that happens to be in need of a family doctor.

Well, there was a couple of issues that we had to deal with off and on. One, was the "office manager". He was just an ass, to put it bluntly. He always looked down his nose at everyone. He thought he knew it all, and even though he I am sure is "good" at his job... he is NOT good with people at all. I had more than once complained about his attitude and that I did NOT want to be treated as if I am pond scum. I was certainly not bad about being an overly needy patient, and I tried to refrain from asking for too many "favors". In fact, I really never asked for anything other than a few forms to be filled out in order to get my husbands medication filled for free or for much cheaper than the pharmacies.

This doctor diagnosed my Lupus and RA. He was the one that started me on medications for them, and took care of me, while I tried to find a Rheumatologist with some kind of sense for sure. To this moment, I nor Jim, nor anyone can figure out what the hell went on, and what caused this "sudden" issue, when it is plain as the nose on anyone's face that there was an Error, on the part of their office to NOT tell the Lab to DO THE BLOOD TEST A CERTAIN WAY OR, the LAB did NOT run it the way they were told. Either that, or there is SOMETHING, SOMEONE, is NOT telling me! I know what I see. I know what happens when I am around and there to witness it. But, if I am totally left in the dark about an issue, or something not right, then I cannot make an informed "reason" as to why something like this happens.

Now I do know a couple of "facts". First of all, this business about the government, the DEA, the entire realm of mess in Florida with pain clinics and seedy "quack" pain doctors etc.. has definitely put "fear" into lots of people, along with made a "Good medication" when USED CORRECTLY!, Look like a monster! But, as I said "used CORRECTLY"... IT IS LIKE anything else, if you "abuse" it, then it is Bad for you... or bad for whatever... Then you give "too much power" to some people in a place such as someone over the "legalities" of meds without any governing power over them to oversee what is done, is NOT harming some, and you get a freaked up pile of mess, that THE LEGITIMATE PATIENTS suffer needlessly from! There is NO reason, not one that any person that is truly a Chronic Pain Patient, that has NEVER abused anything, that has lived by their "pain contract", that has "passed" "tests" of whatever, all this time, or been treated like things are totally fine, only to be delivered a ridiculous letter, without any type of warning, without one sit down in front of you and explain WHY this is happening! IF anything is wrong with this, THAT POINT is what is MOST WRONG! WHY NOT have a CONVERSATION AND EXPLAIN this to a PATIENT, rather than take the "unprofessional" and just plain rude way, and not speak to them, not answer their emails, not answer a phone call, not ask them to come in and have a visit, nothing... and then you are also seeing their families??? Now how is that going to go? Like I said above, this situation puts me in such a horrid crack... I am stuck between first of all NOT KNOWING for SURE what is going on, only what I see and know... it puts me in a place of course of being upset, embarrassed, and thinking why should I see them if I could get the same treatment. Down the line a few months, and they stop refilling my medications? And I am not talking about pain medications, I am speaking of medications for my Lupus, my blood pressure, heart and so forth. If this doctor is leaving, or is "mad" at my family, or has something with us that he does not want to treat my family, then he should be professional enough, to just speak up face to face, and tell us what the hell the deal is! If I or my husband, or my Mom, have offended someone, or hell knowing this town, God only knows what kind of stupid "rumor" he has been told... because believe me this town is known for its lying, gossiping, half truths. People do NOT get the entire story, so they "make UP" what they want to... in which sometimes people's lives get frigged up due to a flat out lie being told. Before you open up your mouth when it involves anyone's "reputation" or their "good name", you had better give it deep thought, and then really understand what you could cause. If you are going to "stir up harsh feelings" or cause someone to be "smeared" and you are not sure what you are talking about, it is better to just keep your mouth shut, rather than say something you will harm someone with by being nosy. Small town are noted for that crap. One reason why I did NOT want to move back here... the small town mentality, the gossip, the "whispering" behind your back... those things I just cannot stomach. Since I have been trying now for 3 days to "finish" this and post it, I'm going to say it is "finished" enough to post & if I have further thoughts, I will just add it on and let you know there is a new "piece" under it...