Monday, September 30, 2013

What Do You Say... When You Feel There Is Nothing Else TO Say???

I did have a post up about this... but I decided to hold it in draft mode for a little while. I don't think I am finished with it, and I want to get the point across so I will wait...

Speaking of Medications... and Gabapetin & Thoughts...

Morning All... May I say Good Sunday Morning All... Well, for now it is good because I could get up out of bed, but I am not sure just how I truly "feel" yet. I am kind of in that foggy wave of whatever it is... the Gabapentin, or if it is the brain fog it self today... we have got rain and have had all weekend! For that we are blessed! I hope everyone is waking up and getting their bearings for the day. I know my husband did not sleep well, so he maybe sleeping in. My stomach seems to be acting up, so I am not sure what is about. But I do know I am having hell typing this morning.. I can't spell anything correctly, and I keep putting sentences together wrong, so I have to see what is going on with me. Everything I type is either misspelled or not in the right order. I still believe it is the Neurotin or whichever you want to call it messing with me... it is driving me crazy though. It happens more in the early am when I first wake up. Everything is "off" kilter. This morning it is certainly bad. I have had to go back and retype every sentence in here two or three times before I can even think about posting this or anything else for that matter. But the stuff does not bother me right after I take it, like in the few hours after taking one of the pills. It takes overnight for me to notice all of these odd symptoms going on. But what is sad about it, is that I think it maybe helping a portion of the pain... It seems it could be... I don't want to shout to the roof tops too soon...

Thursday, September 26, 2013

Same Answers - Makes I guess NO Sense When You "Feel" your Life Disrputed...

More "NO" News of course....

Well, I get the same basic answers from every doctor. It is "Lupus" , yet it is more than likely Lupus mixed in with MS, RA, Sjogren's, Raynauds, probably FM or CFS to boot...IN other words THEY HAVE RAN OUT OF DIAGNOSIS on me!!! this doctor wants to order another CT Scan and I just had one in March! I know as well as him and the other doctors, a CT scan is useless as far as the brain, MS lesions, or any type of disorder of the muscles and so forth. ONLY a MRI can give them what they need maybe (some do not help at all, yet the people have MS etc) So, it is a waste of time and MONEY Those suckers cost me 200.00 EVERY time! And right now I need one on my hips, which will help with that problem. He says he thinks I have some type of "muscle" disease going on... but it is separate from the memory loss, etc... thus the CT, and then he wanted a carotid artery sonogram, which I had one about a year ago, thus I see my heart doctor Monday so I will ask her. She did the last one, and I bet she says it is not necessary. And even though I just had a entire mountain of blood work done, he wanted another test! I asked about Myasthenia Gravis and there is a blood test for it. But that means a trip to our hospital and probably another co-pay there. I am ready to call it Done, DONE DONE... I "might" have them all and guess what I am ON THE VERY MEDICATION they would use for them anyway!!! So, why the hell am I getting worse??? Again The Lupus!!!! Right now I am utterly pissed at the Wolf"!!!!!!

Taking Care of Your "Own Business" First!

Lots on my mind this morning, from going to the Neurologist this afternoon, and wondering what I will find out from him, if anything. I have only seen this doctor one time. He seemed "thorough" and he does not like to run tests that have already been ran recently, thank goodness. I went to him when the double vision thing began. He thought at that time I had myasthenia gravis. But, I have developed new symptoms since seeing him, all of which seem to me to point more in the direction of MS as I said before. Then there is our class reunion coming up. I am trying to make up my mind whether to go or not. I know I will probably kick myself if I don't. I missed the last one because no one had my contact information. I am just self conscious about all of my surgeries, the illnesses and how they have changed me... so I am a bit feeling like I may not want to go due to those things. Then I still have Mom and some things to deal with. Nothing that is difficult, but just a few things that need to be done and I just need to make a list, and go do them. She also wanted to go to the Casino before the Winter weather sets in, and we truly need to go to Mesquite and see her sister that has the cancer. She is on oxygen constantly now, and I know we could get a call anytime, that she has passed away. I fear both Mom and I would feel badly if we don't get up there to see here before something happens... Last time we went to visit, we went early, stayed just a little while, then went onto the Casino. It worked out well for us... so that is what we might do this time also. I also have my own list of "home to-do's" ... things like cleaning out closets and dressings, getting our warmer clothes out where we can get to them, cleaning all of the rooms in the house, one by one, thoroughly from floor to ceiling... I did finally shampoo my rugs yesterday in the living room and office. OMG, I only got to go over them once, and I could not believe the filth that comes out of them. We have this "gray dust like matter" that settles everywhere here. It is like a very, very fine, almost powder, but it covers everything. I don't care how tightly you have your house sealed etc... that stuff is horrible. I am constantly dusting it off of everything, and before you clean it off one thing, it settles on something else... it is nerve racking for sure.  I need to work on my book, and my "voice" seems to not be with me right now... which sucks. I hope as the Fall sets in, I will find my voice again, and be able to write for the book. I also made what I call an "executive" decision a couple of days ago. I am definitely going to put myself as "number one" and try and work on me first! If I can't feel better, and more well, and be happier with my life, then I can't help anyone else, not the way I should. The only way I am going to truly feel better especially mentally is take care of me first. I always felt like that is so selfish and self righteous yet, if I don't then I feel I maybe either finding my health faltering worse, the chronic illnesses getting worse, the pain being worse, and I am going to feel more like a failure than ever. So, I am going to make a list of things that are just for "me". Whatever those are, I want to attain them big or small. Then I can be a wife, daughter, Mom etc. I know everyone has tried to "beat that into my head" but I am a natural "care taker". I always have been. It is my nature to help others, no matter what state my own life and health is in. So, I am going to have to learn to say no at times, and decide what is best for me. I find inspiration here quite often on FB from the friends and groups I have here. Sometimes it maybe just a post on a certain web site or article. Sometimes it is a post directly for me, that lifts me up. Other times it is me reading others FB's stories and so forth, that give me a way to look inward, from seeing others outward. I gain a great deal of my passion here at times, that helps me find things to write about, or to add to my book. So, I have all of that going also. I am also in a "bad" spot about this nation and our world. It is a dangerous hell hole, is what it is. Even right here, when a wife and Mom takes the lives of her 3 children, her husband, and then herself... within less than 10 miles from me... you know those types of things can lead to a "copy cat" from others that are depressed or already considering harming themselves or others. I realize she may have been severally abused by her husband, of which I can see getting to the place you cannot deal with it anymore, but to take your life and your kids lives... I truly wished everyone around her could have seen the problems and helped her get out... or wished she would have asked someone to help her. That is just one of the issues, there are so many. I am not sure about this Obama Care... some things sound good, but it has been "hacked" up so much, that many of the good things have been taken out and what we don't need left in... thanks to Congress and their "magic scissors" that they use often to cut up the "bills" that are "for the people".... and then glue them together to benefit their own needs. The business overseas in Africa, with the Mall incident, could happen in any Mall here at any moment. Everyone thinks oh I can't happen here, Oh YES it can! If they want to harm us, they will find a way to do it, and that's for sure. And with the entire Middle East in constant turmoil with their own country, and with other nations, that is where the "great" battle will take place. Just look at all the of "unrest" in every Middle Eastern Nation, and the unrest in Israel. All of that portion of the world are insane. And they like to reek havoc with any "Western" country, especially those that are "allies" of America. Face it, many of them hate us, and don't mind hurting us if they get the chance. Yet look at our own "inner" wars here... at Chicago, and all of the rage, hatred and violence. But there are many more cities across the nation that are doing the exact same thing... No matter where you turn, or what you see or hear, radio, newspaper, online news, magazines, Television, any of it, the news is usually bleak if not just sickening... I fear even watching it, for the reason of wondering when an attack on us will be right here on our own soil. These are just a few things that are swirling around in my mind... sometimes my mind expands, and other times it shrinks so badly that I barely know who I am!



More from FB

honestly what is so incredibly sad about this, is that I feel just about the time things kind of look "upward" in my life, I get kicked right in the teeth again... I don't know which way to turn or even what to say, not say, do, or not do. I can't think, I can't even put a sentence together it feels like... and then I began that all of that "movement" mess again last week. It began with a little bit of vertigo, and the next thing I know, I am "moving" again... I feel it when I close my eyes, and I guess it has to be the hardest thing to explain. Until I experienced here in about 2006, when it happened the very first time, we went to the ER, thinking a was having a stroke or seizures of some kind... they gave me an injection of Valium, calmed me down, and told me to see my doctor that week. Well, I was put on Valium, and then I take Meclazine daily and usually this stuff stays in check. I think all of the overwhelming amount of stress has just made it explode again. And there are things that have taken place just in the past week over and above any I have talked about that have just also added an extremely higher amount of stress than I need. It is just all nuts... I have been trying my hardest to even get to church on Sundays, and the last 3 Sundays, I get up feeling like someone ran over me twice... it makes it difficult to get up and get dressed. and then try and enjoy being a church when you are hurting, and dizzy, and just all of the symptoms that are going on with me now... Again I appreciate your concern.

Wednesday, September 25, 2013

Fullness Arising...

Been awhile since I got inspiration for a poem... and the full moon usually gives me just that... so here is a new poem.... Rhia


Fullness Arising...

The wax and wane of a Full Moon rising,
In a circle forever, bringing feelings so enticing!
Some say the risen full moons even hazy..
Makes many people act "off" as if they were crazy.

The "pull" of tides, the realms are often unknown...
Yet, the heavens more and more almost call us home.
Life is a constant revolution...
In a Full Moon will be find a solution?

About how man's soul can be so pure...
And how much drama can one person endure?
Do we "hear" the cry coming from the moon?
Will we move on beyond and leave this Earth soon?

So many questions that go unanswered,
Even "good" could lead to certain hazard.
Breaking down in the pure high pitched glow,
Tell me the truth, do we reap what we sow?

We are the ones that can bring happy endings...
And also there are those only with drama rendering,
Only in the black ink darkness can it shine,
Many darkened souls, now not so divine.

They lead us to where we think we should go,
But do you follow in the full moon's glow?
Or it that a place that should be forevermore protected?
Will we all be not good enough, and all be rejected?

Can we take our natural good from within...
To leave behind the pain of all sin.
Will be finally come to rest in that place,
Where love abounds, and we shall stand in grace?

When I see the glow under a Full moon tonight...
I almost see that heavenly place in the sky...
Where soon no sorrow, no hatred, no sickness will be...
As all the bad melts away; to leave us peace for you and for me.

It Just Keeps Coming.... and Coming, and Coming.. like the Ever Ready Bunny

I am posting some of the things I did not get to post over the past couple of days.... more insanity... from doctors, from the government, from everywhere you look, more insanity in this land of and home of the brave and "free"???

This was Monday...
Well, I spent 4 hours at the doctors office today to learn ABSOLUTELY NOTHING!!! I truly believe this doctor has lost his freaking mind. He tried to BLAME all of my "symptoms" on my HEART MEDICATION that I have been on for FOUR YEARS OR MORE! He in fact tried to blame all of my stuff, even my toes moving by themselves on my medications. Now don't get me wrong I do believe many of us are on some medications that can cause lots of horrible side effects. BUT, this man was a totally idiot! There is NO way all of the things that are going on with me are due to medication that I have been on for ever. I am truly ready to find another doctor. Dammit, I waited for 45 minutes before I went into the "little room". Then I waited another AT LEAST 50 for him... then I get this stupid shit about meds and their side effects, and how I am a "complicated" patient, blah, blah, blah... same crap I have hear, just a different day.... and then when I tried to question him about the incident with Jim, I got this long speech about how He asked the "Lab" for the right test. Well the LAB was wrong!! He did not offer to have it checked out... hell it may not even have been Jim's blood! Nor did he apologize for all of the freaking grief he has put myself, Jim and everyone through now for weeks... insanity....GREED!!! He wants more and more, so he uses us for his stepping stone... got the "full" and overfull schedule now, so to hell with us as patients... he is filling his pockets full... I was so hurt, disappointed, pissed, a little of it all when I left there... and guess what>>>??? I still DO NOT KNOW what it WRONG WITH ME!!! They all suck...

more on Tuesday....
Time to fire the doctor! This just sucks so bad because he "started out" as a wonderful asset to our community. I would have highly recommended him to anyone back just a year ago. He has just "went south" as far as I am concerned about 10 months ago. I began to see changes, like him not staying in the room long enough with patients, making us wait for him for a very unreasonable time, and never "apologizing" or explaining it. And then I began to notice rather than "treat" me as he did in the beginning, he wants to pawn me off to another "specialist"... and then he can't remember who he sent me to, or what he has even done... he used to remember or at least refresh himself before he came into the room... so he knew exactly what was your issues. Now he flies in and starts asking questions about crap that had nothing to do with the entire LIST OF STUFF I gave the nurse I needed to address. Literally, my appt was supposed to be at 11:45 am.... I FINALLY got in the room about 45 minutes later. At 1:00 pm he came "flying" into the room, and after me telling him a bit about my symptoms, he began all this crap about my medications and side effects. Then he talked about this illness called "polymyalgia rheumatica".. and that my "symptoms" could be that, "because he had another patient kind of with the same thing"... BULL, I am ME, not some "other patient".... well I got home and I kept thinking this "condition" sounded familiar... well HELL YES... this was the mess I went through with the idiot that did the temporal artery biopsy, and then made such a scene in front of me in the OR when I was waking up, that he is under investigation, but what makes it worse, I already went through ALL THE TESTING FOR THIS, and I DON"T have it... plus my "symptoms" do not FIT at all... even these "side effects" he was talking about from meds I have been on for years, "do not fit" my symptoms! YES, I do know that medications, especially as many as I am on, and the kinds, can cause all kinds of issues, I have many of them... but I know the difference I feel between a "side effect" and a "new" symptom for the most part. I am sick and tired of having to "diagnose myself" then go in and tell them what is wrong!!!! He is too busy being a greedy, money hungry jerk, and he is a coward on top of everything, he spends more time over at the hospital trying to win them over for a "position" rather than treating his patients as he should. He is not going to last very long here, if he continues acting like he does. We have several very new PCP here that would be happy to have a new patient. I think we may have at least 4 new ones, and several who are fairly new in the past 3 years or so... so he may think he is "wonder-doc" but I have news for him, patients can GO, faster than we came... I am just still so pissed off at him... I want to send HIM a BILL, for my time he wasted.... he ruined an entire day for me... by the time I got home, it was late in the afternoon, and I was totally wiped out....

more on Monday and Tuesday...
You know after he pulled the stunt with Jim and all of that happened, we thought the same thing. Maybe that is why he is "getting rid" of his "pain patients"... not because they are doing anything, but because he fears his own issues getting caught... he "seems" to have this "never ending" energy... so he is either going to burn out quickly, or he does have issues with something that keeps him going and going, about the like ever ready bunny, Betty. I feel lately like all I do is bitch about doctors, or something going on in my life. Hell, it seems everywhere I turn either a doctor, hospital, pharmacy, or someone is NOT doing their job, and I either have to do it, or fix it... or call, or write, or go to another doctor, or have this, that and the other test... and on and on and on... It is nuts that I feel I spend more of MY time "doing" others crap than taking care of my own stuff. People in general just don't give a damned anymore... just like this horrid situation down right here within 10 miles of me in Rice TX. Here this man kills his wife and three little kids (all below 10) and then himself... and people seem to almost be "complacent"... we see and hear about all of this so much, it seems just think of it as "normal"... well hell if it is! NONE of these shootings, killings, and night mare issues by those who choose to harm others is normal! From overseas to right here on my own "home turf' this stuff is insanity. I just cannot see how we as the human race can go on much longer with this kind of attitude towards one another. Yes, luckily we still have "a few great people" left, but more and more we see, corruption, greed, drugs, corporations taking everything we have, the government allowing this crap to go on, now they are allowing "guns" in schools??? Yet they are thinking about NOT teaching "cursive writing"??? What kind of crap is that??? Kids will not know how to "sign their name" anymore??? As much as I love computers, they are ruining our kids. They do many wonderful things, and help with so much, but they are also the downfall of this nation and this world IN MANY ways! They have caused people to lose jobs, due to taking the place of humans... they are becoming almost "too smart" as far as I am concerned... we see the "thriller horrors" where computers "take over" and kill humans off.. well that is not so much a fantasy or sci-fi anymore... they are getting to where they almost can "think" like a human... it is just scary as hell.... Now I know why so many times I fear leaving my home, and would rather be here. When things like this Mall Mass Murder overseas happens, and of course people think "oh well that is over "there"... oh well hell they WANT US, AS WESTERNERS DEAD! So they can come here and do the exact same thing! I would not be surprised at all for us to get another attack from those insane idiots. They certainly hate us enough to try again for sure. We keep trying "diplomacy", and as much as I wished it worked, it is to the place you cannot reason with someone who is nuts! But, I also do not think we should be over there fighting either... we have a definite damned if you do, or damned if you don't situation... yet we have allowed it to come to this... and then I look at things in "daily life" and it is the same, just on a smaller level... we "fight" for every thing we are entitled to... if we don't we are cheated out of it, even our own doctor's visits! I want to ask when will it end... but I should already know that answer....
 and yet more this morning...

And TX SUCKS when it comes to any kind of help for the disabled!!! I have to beg, borrow, and bleed to get what little bit of help I do get. Then I get looked at like I am a damned "thief" when I do use the assistance I get. They DO pay for my "part B", but I have to pay for my "Medicare Advantage Plan", which the cost went up almost 10.00 for next year dammit! Plus this year all I did was argue with them and doctors to get my bills paid right or paid at all. They screwed up every claim I think that was turned in. It has just been a freaking nightmare. But, it is the GOVERNMENT! You are right! WE PAID IN FOR YEARS WHILE WE WORKED, so this is OUR money. Yet, now it is not there for us??? What the hell kind of government "democracy" is that? Where you do NOT take care of your own PEOPLE??? It is total bull crap is what it is. Those money hungry, old goats, greedy, fat, lazy, incompetent asses in Congress ALL need to be FIRED! We need a total wipe out and clean up of them all, and get everyone fresh and new in there. Some of them have been there so long and do nothing but claim their paycheck every time it comes in. It is just like I said about them getting "paid" even if the "close down the government" and our Social Security checks are delayed, dammit they sure as hell have made it definite the GET PAID NO MATTER WHAT!!! Greed is the abomination and the ruination and downfall of this nation! We are headed for a great fall due to those that have abused power, abused people, abused money, and just abused, hurt, stepped on, and crushed their fellow man to get up the all might ladder of success. It is total crap! And lies, lies, lies and more lies... I do not believe anything they (the government) says and I do not believe most of what the news media puts out. They are just as deceitful about everything as those officials in Washington D.C. are. Every time I think about just how shitty we are treated as every day people I get boiling pissed off! Whether it be at the doctors, where we"wait" hours on them and that is okay, but let us be late or cancel at the last minute and see what happens... they can charge us anyway for not showing up and not calling 24 hours in advance, and if we came and had to leave, what do you think they would do??? But I have already been in a room waiting, and them come and tell me the doctor had to leave and they need to reschedule, or I can sit and wait for no telling how long till he gets back!!!! We should CHARGE THEM for the hours we wait. As I have said, why is THEIR TIME, MORE PRECIOUS THAN OURS??? Our time is just as important, so they should PAY US, when we have to wait like that for them. DO NOT book too many appointments like they do stacked on one another, if you can't handle them! But again, more money, and those dollar signs in their sight... Same way with the government, to hell with us, all they care about is lining their own pockets and sitting pretty for the rest of their lives! To hell with all of us who worked to pay their salaries!!! We don't count. They see us like a bunch of ants, more of a nuisance that anything. I have another appointment for tomorrow at a Neurologist I saw several months back about the double vision. He is the one that make the remark about me having myasthenia gravis. Now since I have all of these "new symptoms" crop up, I want to see what he says. I want to ask him if he thinks it could be MS? I certainly GOT NOTHING out of my PCP, but a bunch of gibberish about my "heart medication"??? What the hell that was all about I have no clue. Plus he did not answer about half of my complaints. Even one the paper they send home with you, those other things I questioned are just "blank"??? As I said I think he is having a nervous breakdown. Nothing he said made any kind of sense at all. He kind of avoided the whole reason I was there, a follow up on my Lupus etc... and talked about crap that I was not even there for.... crazy. It would not surprise me for it to be said that he is either leaving, or something. Something is "rotten in Denmark" as the saying goes... Well, (I wished I would get well)... other than that I guess we did not blow up the Earth last night, because we are still here... or at least my house and block art still here.... and I have internet connection, so I gather for most of us we are okay today... what one hell of a mess this world is in... I fear going to any Mall or large venue anymore... I already was very leery, and after this Kenya thing... I do not trust that they are not already here ready to cause issues at one or more of our Malls. People do not think it can "happen to them" and guess what??? It surely does....   Since this is rather long I shall write another post.... 

Sunday, September 22, 2013

Sunday's Thoughts After So Many Emotions Arising The Past Week...

I think I frightened everyone off a couple of nights ago with my posts. I did not mean to offend anyone, and I don't expect anyone to "agree" or even "disagree" with me. Being a writer and true to my nature, most of my "real" writing comes from within. IT is what I am feeling, at that moment that is what I "need" to write. It may be offensive for some, but I never mean to be hurtful to anyone. I knew after writing it, I was going to sound like I was "bashing men". But, I think even most men would agree, when it comes to the "daily" part of living, for lots of men it comes easy. There is no hour of makeup and hair to do. There is no worrying what shoes match what outfit, and what earrings go with this necklace, and hoping everything matches, or wondering if you look too fat in this, or maybe it is too late in the Fall for regular white... and that list for women does go on and on. We are exhausted by the time we get dressed. After being ill, I learned that I get slower and slower at everything, from taking a shower to cleaning house. It takes me twice the time, sometimes 3 times the time it used to. Part age, part illness. So, If I am planning to go somewhere such as the Casino for a Sunday, or even for church on Sunday morning, etc... then I begin getting my things together the night before, or day before. I get my outfit and all of the accessories picked out, found and put where I don't have to hunt for them at the last moment, and already have in mind how I will do my hair and makeup etc. I try to have as much ready as possible, from having the dogs stuff ready if we are gong out for the entire day, plus I try and have the house straightened up, etc. There is nothing worse than coming in after a nice day at the Casino etc... and it is late, you are tired but had a great time... thus you open the door to a mess. I believe in having everything straight, bed made, dishes put up, all of the things that no one wants to see when you walk in your home after a long day being away. All we have to do, is get the dog settled, which already in itself takes a half hour, undress and put up that stuff... (other thing why does it take us 3 hours to get ready for one day out) and you come home for it to take a half day to put stuff up???? Men change their clothes and they are through. No "washing and cleaning" makeup off their faces, etc.. or hanging up their good dresses, putting up you jewelry, putting your wrap or sweater that you took and so forth... we spend almost as much time getting "undressed" as we do getting dressed. I really hate to say this, but it is true. Sometimes because it does take SO MUCH EFFORT to be ready, then to go, then to come home and get everything off and put up that it almost feels not worth it for church for an hour, or some things like that. Even the Casino... it seems like SO MUCH WORK, and entire day plus to get ready, 3 or 4 hours that morning before you leave, and making sure everyone has everything... then the hours it takes to get everything put up, taken off, and all settled that evening... that is why as someone chronically ill... when you do "see" us, we are probably already hurting, feeling exhausted and so forth, from just getting dressed enough to be there. A good example for me is my High School Reunion is coming up in October! I won't even say how many years, but anyway I have been so thrilled about it, until this past week. I really wanted something new to wear, but thinking about spending money on an outfit for just one evening seems stupid. Even a new top for Friday night at the game seems silly, unless it is something I can wear for other things... and then it is all the time preparing, getting ready, something like that we want to look our very, very best for... and when we do not "feel" all that great, it is difficult to "fake" it. Yet I don't want to go looking like death warmed over either. So, now I am hesitant about even going. As much as I want to, I worry after all these years what others will think... back then it was high school... now is so different, everyone has aged, changed, has grown kids and grand kids, hell maybe even great grand kids, been married many more than once, and so forth and so on... we all have our own lives we have led... we are all aging, and the wrinkles, gray hair, and lines of yesteryear after this many years are showing... Even though it feels like just a few short years ago, it is now 35 years later... wow that is just almost impossible to believe... so why do I worry, I am not wanting to be a cheerleader or play in the band anymore... funny how much of us changes, yet some things really never change.... so if I offended anyone, etc... it was not meant to do that, it was to "get out" for my own self some really crappy things that have been eating away at me for weeks and weeks... plus feeling so bad due to all of the medications really have taken their toll on me lately.... have a great Sunday, and by the way today is Jim's Birthday!!!