#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????

Lots of thoughts and prayers needed now...

I can't really go into lots of details at the moment, but there are some really life changing things going on at this time for myself, and my family.

When you are chronically ill, and or in chronic pain... at the first you may never have the thought about HOW MUCH your life can change. Then as the doctors visits, medications, tests, surgeries, fatigue.... and so many things change, physically, emotionally, mentally... all aspects of what used to be "normal"... can be gone within a breath's space...

Then you have two people, one that has been "healthier" that could stand in for the other, when illness or flares hit... and all of a sudden that person is also either as ill as you, or even worse. So, that is when nothing is the same... you may think things will improve, we will find a "new normal".... and it just takes time, patience, tenacity... will power, respect, and love to finally find whatever can go on in the future. Yet, a "dam" appears... the river of life that you felt was so awesome, suddenly turns into a raging force, driving one in one direction, a fork you may say, and the other, suddenly winds up in the opposite direction.... and that is when "trying to piece back your life" can either be not really going to happen, might happen, or usually you finally KNOW, things must change... and change drastically, for both of your sakes...

As I said, I can't go into lots of details, and for now, I think those that do know me, and have an understanding of all of the drama, the illnesses, surgeries, doctors, and pain... from the physical, to the emotional, mental, and daily life - has all bundled up into a huge knot, and you just cannot manage to go on that way.


We are NEVER guaranteed anything but to "live" and then to "die".... in between things can be smooth, even, rocky, a landslide, and so often we are left wondering why the hell this happened? All of the questions, why am I being punished? Am I a "bad" person? Why can't I just have a break? Why can't something be "easy" for a change????

None of us know that answer. And throughout my entire life, most EVERYTHING has been a challenge. There are not many things for me, that have came "easy"... I worked, fought, crawled up the mountain, as the stones dug into my knees.... and slid back down again.... and I do know that only through FAITH and HOPE can I continue to one step at a time, moment by moment, then hour by hour, day by day.... week by week... and then months... years... and one day when I am no longer on this Earth... then all shall be revealed.


So, I WILL continue on with my 3rd book... and hope to finish it up on schedule by the end of the year. I WILL continue to be a voice, activist, advocate, and ambassador...
Lord willing, and my health continue to half way act right.... and hopefully the brain fog, pain and suffering may hopefully have something done about soon... either by surgery, by new medications... and so forth...

I shall give more information as the next days go along... so PLEASE continue to come and join in on my blog... and for those who have always been here to support, encourage, provide strength, faith, and prayers... I am so very grateful for all of you....