Friday, May 30, 2014

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".






























                                                             

Tuesday, May 27, 2014

"Empowerment" When All of Life "Strength" that had Sustained You - Suddenly is Gone - as I Thief in the Night

Honestly, I am here to write, yet I am not sure the words shall even come. The other day I had posted on Facebook and one of my friends there mentioned "I wished I had the knowledge and know how to write things, and say things as you do, Rhia".
I have given thought to that over the past week, and tried to also allow that place, that suddenly was so engrained in me, to be jerked right out from underneath me. The very core of my world was shaken on March 26th 2014.
As many of us, we have events that come into our world "that shake us down into that deep dark cavern" of where we just don't really heed was is going on or not. As the days have gone by, and I have tried to reach into my very soul, and pull out all of the things that are so precious to me, and I mean within myself, I realized even more so that a happening such as the catastrophe like my husbands car crash, not only shook me off my foundation, it has left me in a place of "shock" that I have yet to come out of, I am not sure that anyone else "caught it" or not, but his accident fell exactly one day before my Dad passed away in 2005. If my memory serves me right ( and I cannot say that is does at all) I believe Dad passed away on Easter Sunday, March 27th 2005. It hit me that very evening when we first arrived at Baylor Hospital in Dallas, that it was almost 9 years to the day of these two things happening. In a way, and maybe they also remembered but chose to not say anything either due to the circumstances that were happening at that moment. thus some of my family may have recalled it also. I just have not brought it up, for why at this time pour salt into an open wound, as the saying goes.
In such a very short span of time SO MANY things can change. Until you are thrown into the situation yourself, whatever the circumstances might be, you really cannot imagine ALL of the complexities something like this causes. From me not having my head on straight, and accidentally moving more money from an account than I intended to, so I did not realize that one of my bills that goes through bill pay had not cleared. So, here I was thinking things were fine, then I find out I did too much of a transfer into an account, and then that bill payment came through that I thought already had, so I overdrew my acct. by $.21... I felt so ashamed I was just going to bite the bullet and let it stay and me make it up, but one of the sweetest ladies there happen to have seen it, and asked me what happened. And as I told her, just all of that going on, and I took some money thinking I was good, and put it over into an acct... yet it was more than I really wanted to move, then the bill comes through I thought had been paid days and days before. She as she is, she went to the bank manager and got it reversed for me. But, still, you just don't realize how many things in your life are totally "wrecked" within the wreck I guess you could say, I catch myself looking for my car to go wash it, or now I have a very hard time sitting her at the computer. I was so used to him and I being here across from one another. Even though we may not utter a word to each other for hours, it was just the fact, we were here together. I find myself wandering through this tiny house, and wandering around in the yard, thinking I should just mow it myself. I should be able to mow those basically weeds down... and I need to spread the granules out for the fleas, and spray around the porches, and put ot fire bait, and now I have our bedroom, the ridiculous bathroom, and more over that stupid back room junk catch all room is all going to go. I am going to pitch about 90 percent of it out in trash can bags. I have stuff back there that I will NEVER use what so ever... and I know just from cleaning the windows and laundering the curtains in the other rooms, it just looked and smelled so much more fresh this morning. So, I know allow that pile of crap to go out of there, will again, give me a "new" lease on life.

I just can tell there are some thing that my brain is not quite comprehending... or if I don't have a note or a list (which was already an issue for me) then I am just not on "target".


May 1st, 2014


Ah, the "sounds", Sights", smells, and renewed feelings that come with the rebirth of Spring. The trees opening up their green leaves, as the wildflowers start to pop open. Of course the birds where we are and all of their "voices".... just an amazing sound on a Spring morning just as dawn breaks... and like a silent whisper into a rather loud victory march, the sun comes forth to warm us up once more. Assuredly we can't say that weather has been "odd".... odd, hell, down right insane. I had golf ball sized hail just last week pounding down up us, and you have to wonder are they all practicing with balls of ice for "T-Ball" season... they can absolutely do damage,that is for sure.

although just as quickly as that "rogue" storm marched in, it left us, only to leave a path of destruction from Louisiana to the Florida Panhandle. Yet, on the other side of the nation, California dealing with their the Santa Anna winds and the driving force in fires that burn thousands of acres and hundreds of homes... and they have just barely started.

I've I had tough go of it this past two weeks once again. I have felt lousy and not quite myself, since before I left for DC the last of March. And even half joked about us all going to have pneumonia on the Tuesday we went to the Capitol. It was snowing huge, very wet flakes and it was cold.... even with an umbrella, coat and wrap it was not very pleasant weather to say the least.

What was to follow on that fated trip... came as a shock wave... a tidal of disbelief, and every kind of emotion you could be possibly dream of. I have tried my best to not question, "why"... because if I need to know then it will be revealed to me. I still believe we have the "will" to take our own paths, yet we are somewhat predestend as to what those paths are. I have began to already realize things about me, that I did not know existed, until that day of the accident. And I also realized for the 1st time in my life, it was okay to say "no", I can't. I never thought about me ever "refusing" to help someone, or do something for someone, but I have to had to make those choices these past weeks. I can't be in three places at once, I cannot run on 3 hours of sleep for long, I have to have time to decompress, or I will and am ill. You can throw in the Lupus, Sjogren's, RA, and all of the other issues physically but the point it that I allowed myself to say, yes, yes, yes when I should have been politely saying not this time, but on the next go round I hope to have some sanity back in my life. I continue to find it difficult to even write here... even though I have a billion things to talk about... my new car, which is awesome, the progress Jim has made which is fantastic, Spring coming out, and hopefully getting an oral surgeon closer to begin the journey about my teeth. I can say eventually I will have the prettiest smile I've ever had for sure. I am wide awake, yet I honestly don't want to do this either, and coming from me that is terrible.... I once again have misplaced that inner voice, that keeps me coming back to write over and over again... it has hidden itself now for awhile, and when it finally reveals itself it will have much to do to make up on.

May 26th 2014

It has been awhile... too long really. I've not even truly been here but glad I have come in to see that many people had been following along on my blog lately. I am not sure if they is due to the horrible accident, my wanting to go and then enjoying DC so very much (and I apologize) I WILL talk about it soon. I've just not had the strength to "face" that very last hour or so of that fateful day. Thus trying to tell about ALL of the very incredible things I learned in DC and moreover how many wondrous people I met... it has truly been one of the greatest trips in my life. I surely hope I get "picked" or get into the "platinum status" for Ambassador before next Summit, so I maybe able to go again. I certainly will if the chance arises again.

I've been trying mentally and emotionally with my "reasoning" behind why I am having suck a difficult time of putting words and sentences together.... I am so embarrassed by it, that I have almost am in fear to post anything I write, because my fear is it will not make much sense. I know when I had the pneumonia, I had not been able to type anything that made any sense what so ever. I was terrified the day that happened. That is one say that I was probably more in fear for what was going on with me then any other day I can think of as far as my own self. I was trying to type out an email... I continued over and over to misspell, to type incorrectly, to use the wrong words for what I was trying to say... and as I stood up and realized I was hallucinating so badly... I felt faint but I was hearing things and seeing things. that were not there... I was just walking around the house like a crazy person! I just could not imagine what was happening to me. I had not taken any new meds, I had felt lousy, but I had been fighting a kind of like sore throat thing off and on and felt so drained of energy, but what was causing this so extremely unusual feeling... like I my faint, dizzy, my brain just not "working".... my first thought was to take myself to the Urgent Care Clinic across town. So, Happened Mom had her car that day back so she could go to church that morning, so I called her and let her know something was not right... Thus she came and got me and took me to Urgent Care... Thank goodness, the doctor that saw me happened to also be one of our ER physicians, so that worked out well. He was concerned enough to really send me to ER but then after we saw the lung XRays and he knew I really did not feel like going to ER and further being poked, stuck, blood drawn etc put through another battery of tests, the sent home with probably the say thing he gave me... high powered antibiotics, cough medication, an inhaler, and other pills for my breathing... so fortunately I got home, got on the sofa with my meds and the puppies and we were there all except for the very necessary done... all other stuff was put off until I felt better. Then both my cardiac doctor and my PCP BOTH still here the pneumonia in my lungs. So, I had another round of antibiotics, also my 2nd infusion of Rituxan has been postponed until my lungs are completely clear on an X-ray.... and in the mean time I am hurting like hell due to the lack of a biologic...I t has been a very rouogh 3 or 4 days... Jim is home and he is of course working much harder not having the wheelchair and relying solely on the cane... and me just trying to get used to all of the things that are different now as he takes over a new "home" and new ways to discover how to do things. So, we are "okay" he does to Outpatient Therapy on Wednesday, tomorrow... in Waxahachie..... and for me I am working on getting these teeth all pulled and the "mini implants" put in ... along with insurance to hopefully pay 60 percent of it! Again we take a step forward daily and learn to adapt to this new course... this new pathway of life.....

Saturday, April 19, 2014

Just a Quick Post and I will promise to post more tomorrow....

I've been going back and forth over my "eye" stuff. The double Vision. It has progressed and gotten much worse. Sometimes even now, with my glasses on, it rears its ugly head.

Since everything has happened as it has I already missed my Rituxan infusion and have to reschedule it, my new dentist who also works out of the same facility SW Med, in Dallas, and I am in desperate need of both of those. Plus I feel i may need to see the eye specialist again but I am not sure there is anything else to be done about it,,

I've narrowed the entire issue down to two "diagnosis"
First of all "retinal vasculitis" and moreover all of it definitely lines up as symptoms of Myasthenia Gravis. In fact "MS" and also Myasthenia Gravis came up at one of the last Neurologists I went to. He said it is also difficult to really "diagnose", due to like many of the other autoimmune diseases, there is no "one" test that tells them yes or no. There are a couple of blood tests out there, but just like RA, Lupus and the rest of them... they could be "serum negative" but you have it or be "serum positive" and not.... thus counting on tests right now is usually nuts...

But, my symptoms just tell the story and map out each and every way the symptoms go... so I am including a couple of articles about these, and I plan on doing more research myself. If any of you find something or come across some good information I would so appreciate it if you would post links here etc...

http://www.ncbi.nlm.nih.gov/pubmed/11257479

http://www.aao.org/publications/eyenet/200607/neuro.cfm

There are lots of good links out there with information so if you fall upon anything that mentions this, as well as anything that might help with Jim's recovery from the accident and trying to learn to walk again... any and all is so needed and appreciated..... Rhia

Friday, April 11, 2014

Wanting to try and Give You an Update

Of course many of you already know about all that has taken place with myself and my husband, the accident, DC and the entire gamut of the past three weeks. What began as something so wonderful, was so abruptly ended in such a disaster.

I, nor honestly any of us really know what the hell happened out there coming into Dallas on I-45 a couple of weeks ago. There were three vehicles, 2 of which claim that "saw" it all". One man that says he "saw" from his own front porch what He thinks he saw, yet in the blink of an eye, it seems almost impossible for anyone to have just "happened" to have walked out at the exact time that something like this was taking place. It cab happen, and I understand that. But, the odds of something like that happening, and then between "hearing" and turning around to also "see", as I said odds are what you saw and/or heard were more than likely two different things.

I also know there was people that told myself and the gentleman that was at the time helping in in D.C. after all this took place, that my husband was NOT at fault. As a matter of fact, we both were told by the same "trauma" unit physician about the wreck itself, as much as they knew then, the injuries, how many and what "type" of vehicles were in involved. The details were very specific at that time, even down to all of the injuries they thought Jim had, and there was a long list. So, whomever this Doctor was (and I have his name) and also the name of the nurse who called the first time. As I said they repeated the list of injuries, the information about the accident and even went so far to say that it appeared an 18 wheel tractor-trailer that "ran into the back of our car.

Well, in the first place, lesson learned, get a lawyer immediately, if is it fairly bad accident and even if no one was injured, just get one. Secondly, do NOT wait the "10" days for a police/accident report to be "ready:". If you have to CALL three times a day every day until you have it in your hands. That bull about "10 days" was bull. My own insurance company and the others involved in the accident had much quicker than we were told it would be ready.

KEEP everything! Every note, every receipt.... parking, eating, anything... keep each & every receipt. At the time those things do not seem all that important, but that night I took a fall at the very hotel we stayed at, I kept all of my receipts from both. I did not know that I maybe needing medical attention or how badly I was injured etc. Actually I thought I just had a cut all the way through my lip and a scratch or two. Now, I am dealing with an infection and dry socket from a tooth that had to be pulled, along with now I have a chip in the tooth next to the other one, and my lower right hip/back is just giving me the blues as far as pain. Of course do I know that it is he fall? Well, speculation. But, I was not having issues with any of that until about 7 days later. Then it started acting up. Even an any kind of fall, or accident sometimes it is a week or more before all that is really wrong. So, never get up from a fall, or any type of thing such as that, and completely think oh "I'm okay"... you may think... but bruising on the inside, especially deep so nothing "feels bad, or looks bad", until it has had time to manifest itself in the right manner,

For the most part right now I wanted to let everyone know, that as lousy of a time this all is, right now we are just trying our best to put one foot in front of the other. When something such as this takes such a toll on your life... nothing I don't think every truly returns to what you thought was "normal again".
No matter whether an accident, or a chronic illness, anything that "moves" your life in such a dramatic way, forever more gives you a different vision...

I am still not near the place I am really comfortable to write about all of it. I am just trying as I said above, to keep my ducks in a row! I have several things "due" like my Mom's tax form, that I GOT to get done and in the mail by Tuesday, or file an extension...a which if I have to I will..

I also have some "brain fog" type mess happening to me... I think honestly what I need to do right now, is get off this computer, fix me some breakfast & watch a couple of movies for now. I am feeling lousy and my mind does NOT work, when I feel physically crappy... so I maybe back on today and I may not be. Also, don't panic if you happen not to see me post etc this weekend. I do have to finish those papers and get them in the mail, plus I have several other things hanging over my head I just need to get done and off my plate, When those things bothering me, I am never going to put my head back on straight. Plus whatever is going on with my lower back and hip are not helping things at all. I can barely sit HERE when I         KEEP TRYING TO FIND SOME WAY it does NOT hurt to sit. So, I am off for a bit today.... and I will sign back on and talk more once some of this stuff is off my shoulders,..












Wednesday, April 2, 2014

World Autoimmune Arthritis Day/Convention - Check out the details below!

Please be sure to Check out WAAD14!!! The Premiere in a World Autoimmune Arthritis Day/Convention! Please see all of the information attached for all of the information! There are 47 hours o NON-Stop information, experts, booths, and so much more... We look forward to Seeing YOU THERE!!!





Registration for World Autoimmune Arthritis Day is now open! We have 47 hours of continuous live action, including chats from Christine Miserandino of ButYouDontLookSick.com, Randy Horwitz, author of Integrative Rheumatology, Arthritis National Research Foundation and one of their top scientists will be talking to YOU about research and MUCH more! 40+ booths from nonprofits around the world, an interactive Day in the Life of an Autoimmune Arthritis Patient experience where you can send Challenges to supporters so they can understand!

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World Autoimmune Arthritis Day is a 47 hour ONLINE Virtual Convention you can attend from your computer! The virtual doors open at 6am ET/USA May 19 and close 5am ET/USAMay 21st