#invisibleillness Blog Post - and talking about the "fight" of our Life!

"Invisible Illness"? A term to some that would or may not make any sense. Usually for the most part, if you have an "ailment",  surgery, are ill with bronchitis, even things such as diabetes, people tend to "see" outwardly some signs of "illness"... a cold, the flu, even something such as hypertension, high blood pressure, will bring some outward visions maybe the person's face tends to be red, or they may show signs of edema, swelling.

Obesity, is a disease. Of course that, or anorexia, those ailments are also able to be seen.

Someone who has a loss of use of their limbs, such as legs, arms, or have an injury severe enough to require a cane, or a walker or wheelchair... all that can be seen....


Yet, when you "see" a person with Rheumatoid Arthritis, Osteoarthritis, Lupus, Chronic IBS, Pernicious Anemia, MS - at some levels, Mysethiana Gravis, Sjogren's, or chronic types of nerve pain, migraines, and the list goes on and on of true illnesses, that are often not "witnessed" by the outside world. Chronic Pain, which can result in so many, many 100's of different ways, may not absolutely "show" to the outside world.

So, when you see a person parking in a handicapped zone, and they have a placard, even though they may "appear" to be "fit as a fiddle" - never assume that is so. Some days, I may not use mine, or feel like I don't need to. Other days, it is almost imperative for me to try to park as closely as possible, especially is a large store, such as Wally World, Beall's, Penney's and you know the rest. I maybe in so much pain, or feel so weak, or so fatigued, it is all I can do to go in, get exactly what I need, and get out. But, outwardly someone passing by, may not see that in me.

I am a recent new member of a church. Some people there know me, or have made it a point to get to know me, thus they can "get" some reasons why I may appear to look one way yet feel totally another.


I've found that even with my own physicians... if I "remotely" go in for a follow up visit, especially with the Lupus, RA and so on, I had better NOT "appear" all that "better"... in other words, you walk in and even though that physician may have been seeing you for years, if you come in dressed in a nice dress, or nice jeans and shirt, have makeup on, and your hair in place... and jewelry on, some see that as meaning you are "okay"... which can be as far from WRONG as possible!!!!

99% of the time I go to my doctors, whether the Rheumatologist, my pain doctor, my PCP, my heart doctor or whomever, I make sure I DO NOT appear like "nothing" is wrong. Now, that does not mean go in appearing as if you are on "death's threshold"unless for real you DO feel that badly, and believe me there are times I do look it and feel it... but if I am having issues that I feel I want them to really HEAR and LISTEN to me, then I dress more casual, usually forgo most of the makeup, and not come in joking with the staff, and laughing it up.... because no matter what "medical records" show,  that "appearance" is what can make all the difference in whether your true concerns, pain, illness, problems are truly addressed or are more brushed off due to the fact you appear to be doing fine....


In fact, I know that most of us say, "Hey, how are you"???? or we are asked that in any setting and especially in the doctors office. I've come to the place that I say, well not really as well as I want to be, and that is one of my main reasons for being here, something is wrong, I am in too much pain or this and that are swollen, or whatever all of the symptoms that have been going on, I make sure I totally explain that, and I do NOT any longer, give that "oh, I am doing okay".....

Plus with "invisible illness(es), they are often just that "invisible"... and I always go with a very long list, of symptom, especially new things, of my mental, emotional and physical shape.... If I have heard about a new medication, or something that sounds as if it could be right for my situation, that I put notes down and I go through each and every one of them explaining, what it is or is not, how long, when it happens, what type of pain it is, and as you can tell, I try to MAKE any specialists, doctors, radiologists... whomever is doing something on me that moment... I get all of the information possible, and I ALWAYS ASK for a copy of the "test", lab, dr. findings, surgery notes, and so forth... I get it all, and I keep it all... that way I have PROOF that this, that or the other happened or did not happen so I can keep up with it, and also take it to other physicians that may need to see me in the future...


The EXTREMELY REMORSEFUL thing about having a/AN INVISIBLE ILLNESS(S)... is that YOU FEEL ABSOLUTELY INVISIBLE YOURSELF!!!!

There are so many times in my life, whether it be at a doctor, having surgery, going through one thing of the other... is that I feel as if I am just a "ghost", another "body" for them to work on... and that the "person" that is there, very real, with every breath you take it is like they could care less what you are feeling, thinking, going through... it is all MONEY, POWER AND GREED!!!! I CANNOT SAY how many times I've repeated those words as of lately.... MONEY, POWER AND GREED!! Where is ANY Sanctity for the HUMAN BEING AND HUMAN LIFE ANYMORE????

Thoughts as I ponder my own Health, Lupus, RA, Sjogren's, those that "harm" us, those that have all disregard for human life.. the nation and world in vast and deep trouble...

I put up a couple of new pics earlier on Facebook and I wanted to post them here, and then write about some stuff I've been wanting to write about... lots to do with my own life journey, this river of all too often the "unknown"... we  ... none of us know what the next moment holds... we are not meant to... thus each breath leads to another "surprise" of life... this below is about dealing with illnesses, chronic in nature... Lupus, RA, Heart problems, Sjogrens' the severe pain of them, they tend to try and consume your life, mind, heart and soul... and how then a relationship, although we never know either can literally "suck" the life out of you... before you even know what has happened.... So, I wish each of you, a good life, be safe, love one another every day, every moment... do NOT let a moment pass by that you don't try and make someone else, yourself, or even your "four legged" friends... (I speak of my pups) that you don't love them, and tell them often... 

We never know if we will be shot going down an Interstate, or bombed and terrorized in a church, place to eat, on a job.,, in a market... WE have MANY, MANY Horrible people that spend their life "killing others" and never bat an eye doing it... it is all around, and we hear, read and see is way too much... our NATION and OUR WORLD are in much need of PRAYER, PEACE, AND HARMONY!!! ... YET, too many do not have any regard for human life... I just don't and cannot fathom that they do that in the name of their "god" or whomever they worship.... 

After the SEVERAL what feels like MONTHS the past weeks... I needed to hear something "positive" 　 I have been so totally frustrated with "life" in general... mainly of course illnesses and medical issues. I am still not "completely convinced about this leg being "not infected... but the surgeon I went to has been practicing for many, many years... so I must have faith that he knows what he is looking at. I learned a few things from him by asking questions, especially about MRSA, and what to look for and so on. I am not sure why that even though this lump was "abscessed" is it not "grow" anything. You would assume it being "infected, which is what I "assume" abscess is, that there would be some type of staph, strep, or something that would grow out of that culture. He took two... because I actually had two pockets of abscess from what he said, one not very deep, but the other quite deep into the thigh. I am still taking extremely good care of it, and not going anywhere without it covered and I am still actually covering it with gauze. For one, with the two pups, and then jumping to see me, especially when I sit down in the evenings on the sofa to watch a = movie with the, they both are pawing at me, or putting their heads on my legs etc.. vying for my attention,.... talk about UNCONDITIONAL LOVE!!! That is what I get from Bub's and Tazzy.... they love me in spite of being ill so much, being not able to sit with them every moment of the day LOL, if I have my makeup on or not, no matter how I am dressed... they love me... too bad I never found a "spouse" that was so committed to me... Yes, I did say that...I am so "fed up" at the moment with people that "commit" themselves supposedly 110% and vow to be there no matter what, yet when the tough times roll around, guess what... GONE... on 60 SECONDS! I was totally "committed" to each and every relationship where I said and vowed to do that. But, as we know it takes TWO!!! I could not do "all the work" and the other party not want to work at it at all... and in fact at the moment I am quite livid in the fact, that I've been deceived, lied to, cheated on, and you name it, and I know that even my neighbors who have known me now 8 years must have been "told" I was the problem!!! They barely even "look" at me... and they were here all the time "before" the other party left for Seattle... so I can't help but think someone said things that make them think I "threw" it all away etc... when I never did such... but after trying to work on it for almost 13 YEARS... between my own health, my Mom, and ALL that I need to do... things that I gave up, in order to make a relationship last, I am SICK of GIVING, and someone else doing all of the TAKING!!!! Plus I am TOO OLD and TOO much water has flown under the bridge, that I shall NEVER "beg" anyone to be with me, or stay, and so forth... I am too disgusted with all of it, to even truly have the stamina to "fight" for someone to be here. I am just as well off, even though I am lonely at times, the pups as I said love me, no matter what... and I've vowed to NEVER again get into any "long term" anything... And no one say "Oh, you will feel differently later..." NO! I won't... I am going to spend the time that I "wasted" on committing to someone who just took full advantage of my tenacity... and put all of that COMMTMENT back into getting myself as well as possible, writing my (or may I say finishing") my 3rd book and getting it published, along with more much more energy into my blog... which is doing fairly well... and into my activist and advocacy work... those things are where my true nature, my passion, my love, and what I feel my life is truly about... and no more will I forego those things to try and make someone else happy.. if they cannot be happy themselves, then I certainly can't make them happy .... I am off to post this on my blog... do a few things I've got to catch up on... I spent yesterday outside a great deal... washed and got most of my car waxed... and got some of the dead limbs and trees down that my neighbor "left" rather than take down as he said he would before he built that UGLY HUGE MONSTROUS WHAT IS SUPPOSED TO BE A GARAGE... it is bigger than my house! So, I've got lots of things I have to do for my home and I am already too vested in it to not finish what I began... so as the next moment, hour, day, week, and hopefully YEARS flow... my hopes are to "do" exactly what I feel my true "calling and purpose" here is.....