Life, Lupus, Symptoms, RA, and Coping... (My Own Pretense Portion 1)

(Portion 1) I began this weeks ago. So, I've decided to post it, some at a time, rather than one huge post... Maybe I, can find some "reasoning" for things that I have questioned through my own writing.... so here it is .... the first portion....



Even though the "title" of this only names "4" items, there are SO many more, that if I posted it all in my title would be as long or longer than my blog post.

Rather than bore myself and everyone else with some title, I much prefer to get right into the "meat", heart and soul of writing this. Many of you have followed my "trail" for a rather long time now. Well, before I had a great deal to so the Facebook, or truly decided to delve into the realms of blogging for a good reason.

As with life, and everyone else, I have underwent changes.... changes in illnesses, changes in life, changes in the way I feel about life, what I want to "accomplish" during the rest of my time here, and we ALL have lists and lists... and if you are anything like myself, I have another list to keep up with the lists. Humans are just that, humans. As I began this, my first portion said we all change our minds, we all have things we have to live with, tolerate, long for, debate, are stubborn about, will give in, and some things in our lives , we tend to have a firm stance, and like that tree with the larger trunk, than any other near it, nothing will move it - not until the heavens and Earth someday are moved.

I've gone through SO MANY "adaptations" since my RA/Lupus/
Sjogren's/Raynaud's.... and oh how the list tends to grow along this past 7 to 8 years. Blood work, physicians, specialists, MRI's, CT's, EMG's, NCS... and it seems those tests with the initials also go on forever. You finally come to realize you are thrilled with you type EMG or any one of the other numerous "initials" for tests that someone, everyone knows what you are talking about! Finally you have found somewhere you don't have to try to type out an entire 15 letter word for a diagnosis or test! Boy, though when you reach that place, sometimes it smacks you right back into thinking, damned this is seriously becoming a way of life. When I know as much about the tests (or at least what those initials mean) as the doctor does, or understand all I am reading about in an article online without having to flip back and forth to "Google" a word, you have reached the point of "Face it, You have one or MORE Autoimmune Illnesses"!

So, we put up with the poking, scanning, tiny little needle like electrodes being put into your muscles, injected, directed, and all types of waves going through you... to this place you think, okay, that has to be the "last one". The last test, the last diagnosis, the last new medication, and NOW finally I can go on with my "life" as I had planned it before all of these turns in the road took place. Guess what? Nope! Not yet! Although maybe, you reach just a couple of things, that need a couple of scans, and only 1 new medication for now.

My body feels like it is on its last "leg"... my mind feels like I have thought every thought that have a been thinking seems as if it leaves me with no other thought that would possibly be "different" or of my own.

I feel submerged in a "vat" of vastness, not knowing if I can breathe or not, do I actually "see" something, feeling something, taste or touch an item, hand, piece of fruit, a fork, spoon, or a human? I am just a wanderer now... wondering as I wander about, never knowing from one moment to the next how to think, what to feel, whether I should "act" normal, or sometimes act as crazy as I have felt in the past two months.

I wished I knew more answers to so many questions that I have "backed up" in my mind. There is this place that seems to be over wrought with all kinds of questions, from things about the wreck, to things about my Advocacy and Ambassador in the Arthritis Foundation.... to my own illnesses... my teeth just seeming to fall out of my mouth due to Sjogren's, and the $8,000.00 it takes to get them fixed.

Even with insurance the BEST I can get would be 60 percent of it paid. Yet, that means trips to Dallas, multiple trips... whereas I already have enough trips there due to the Lupus and RA. There are all of these "new" symptoms, yet I have not been able to be given "why" they are here... why am I so terribly weak, why do I find myself more stiff, and feel as if I can't walk very far without falling... why are all of those happening...

Then there are the brain issues, the forgetfulness, the fogginess, the ability not to spell correctly, and the problems typing that I never seemed to have found out as to why... and I fall asleep all the time... I can be having a conversation and I fall asleep.. I try to watch a movie and I fall asleep... I have found myself just standing on the front porch or deep in thought in the yard and I have literally stood there and basically fell asleep standing. It makes no sense... some seem to think it is lack of sleep for me, but I get more sleep now than I have in a very long time. So, I cannot fathom it being a "lack of sleep".