Showing posts with label Orencia. Show all posts
Showing posts with label Orencia. Show all posts

Sunday, November 15, 2015

Medicare Advantage Plans, Kidney Stones, Pain, and "pain" from life and all we know... trying to find that positive light admist all the negative's....

Thank you so much Tracie L Carlson and Lourdes Villegas-Anaya !!!!   I so appreciate the kind words, and giving me the courage to try and move past all of the nightmare's life can pitch at us, in any given moment. None of us are "immune" to life's way of trying to take us down further each time things happen. Especially when SO MANY happen all at ONCE! I also know that I am NOT the only person on this Earth with a world of problems, and a universe of pain and suffering. I have tried to find a way back to the "light" in my life... although not an easy task. In fact, you are both correct, a great deal of putting up the tree so early, was so that myself and Bub's can find some warmth and spirit since this nation and world seem to be so totally cold hearted and full of so much indignation, terror, and things we usually imagine to only happen far away from us. Yet, that is not true. Whether we are suffering from illnesses and pain, or heart break from those we thought never would cause it, or the loss of someone so special, like Tazz, and my Dad who passed away 10 years ago, and I as I say the "loss" of "oneself" which when health deteriorates so badly, and chronically, it is so very easy to "lose" who you thought you were... we all change and grow, just a fact of age, wisdom (for some), and the way our lives are meant to be... but when you feel as if you have lost your very core of spirit, you inner most power, your ability to see the world with different eyes, trying to not become bitter, and full of loathing, all too often of your own body, and mind.. the fight is not a simple one, nor is being alone to deal with it ever easy either. Even now for me, being in a room filled with people I feel totally alone, and misunderstood. Of course with Tazzy being a Christmas present and was born about the time she passed away 14 years ago, has made the loss of my one fur-kid even more painful. Thank goodness Bub's seems to be feeling better, and after getting his rabies vaccine and getting those terribly long nails trimmed, and without having to muzzle him, :):) I think his feet maybe a bit sore... now he cries for me to help him on the sofa. But, I also realized that he is almost 6 years old! My papers from the Vet said he was 5 years and 9 months old... which I knew he was pretty close to being between 5 and 6 but time has flown by so fast. I look at the pics of him, when I got him home, he was so little, he had a place on my desk he laid... and Tazz the same way, she was so tiny, I could hold her in one hand when we first brought her home... guess that is why that seems like yesterday, and how hard it has been for me to except her passing away.... but I found her and Bub's ornaments, I had bought them over the past 4 or 5 years in the chest yesterday, and they hang on the tree along with Tazzy underneath it... she can too "see" the warmth and love she still has from her home..... And the Christmas Letter... yes I am sure I will find something positive to say, but in that, I will also have to tell the family and friends about all that has happened in the past year. That is why I write the letter, to catch up to family, we do not get to see or talk with very often. So, those letters remain a lifeline from our home to theirs, and from their home to ours. I still have so much to get done... I have to make a decision about my insurance and Mom's - and that is not an easy choice... I came to find out an interesting fact about Medicare Advantage Plans - OUR doctors are NOT the ones who "take" or do not take these types of plans at all. In fact, they have no say so in it.... ONLY the "insurance" companies make that choice... They "choose" whom they will be an in-network provider, and the physicians cannot say no, but they can't have the plans either, unless the insurance companies themselves "choose" them... Now I understand why my hospital is not on the policy we have now, nor some other providers. Come to find out they all work that way... I know I was totally dismayed that NO HOSPITAL within 40 miles of us took the insurance we currently have... that seemed so ridiculous! Well, NOT the hospital's fault... the insurance makes that decision!!!! Now this is mainly for Medicare Advantage Plans specifically, and I do not think it effects like Medi-Gap policies and so forth... thus just because online the companies may tell us that "this doctor" will be covered, by Jan 1st, they can change their minds and NOT cover a doctor we need to see... Talk about a mixed up mess!!! Our dear government at work... I can guarantee you, THE CONGRESS has a huge say over these plans specifically, and they make it as hard as possible, since many of us on them, are below the age of 65, because we are on disability, not "retirement" age yet... Anyway, talk about one messed up situation.... I was all set to go back to Humana for 2016, then I noticed our PCP was not listed as a network provider... thus I asked Thursday while I was there, and come to find out no, but it is because the "insurance" is not "allowing" them to be a in-network provider, not that they do not want to!!! It made me so furious... Humana COVERS our hospitals and so forth BUT not my PCP! And I have no guarantee after Jan 1st, they will "cover" the others they say they will online... it is a huge mess... and for me to try and get a "Medi-gap" policy would be well over 500.00 a MONTH or more... so it is no "win-win" for anyone... except the insurance companies themselves... and "United HealthCare" Secure Horizons SPONSORED BY AARP!!! is the worst! I have had nothing but problems with them all year long, plus as I said they do not cover our local hospital, my Rheumatologist, our Urgent Care Center, which seems totally stupid, and so forth.... anyway, so that is just one more thorn in my side to deal with.... along with all of the rest... again thanks so much, each of you... I did not make it to church again this morning, but I tried to go see Mom yesterday, and by the time I was in the car, I got sick to my stomach, and had to come back in the house, and let her know there was no way I felt like going over... same way today... my stomach is still "not right" but I am in so much pain, again I have to wonder if I don't have a kidney stone... the past two mornings, around 3AM, I awake to horrible and severe lower back, lower abdominal, pain... and down the fronts of my legs... which is usually how I know it is kidney stones... the leg pain, but down my front thighs.,,

Thursday, November 12, 2015

Moving Past "Loss", now I face another specialist, a "wound care specialist" and trying to survive from autoimmune illnesses, and all that comes with it.... more also about the accident...


There were a couple of my friends who posted on FB to me, and this is what I wrote there in regard to some of the things they mentioned... in the days to come, I will reveal much more about this accident that has totally destroyed more lives than anyone knows... and how I see that in the end, those who harm others knowingly, and then lie and cheat... later do get what they deserve... and as from personal experience, I never have to do anything... life takes care of those people in its own way and time.....


I almost feel like I've had to "begin a new day of my life" over and over and over again, almost like "Groundhog Day" the movie... where each morning you wake up, wanting things to be different, to move ahead, to break from the stagnation of all of the bad stuff, the illnesses, the sadness, the grief, the loss, yet it remains... I am trying so hard to get well! I desperately want to get a new pup for myself and for my Chiweenie Bub's.. He is just now beginning to show signs of being "happy" again. He is eating much better, he is bringing me his toys, like last night, he brought me one of his latest "babies", I have called them their babies... and he wanted me to play with him... he had not done that for months and months... between Jim leaving so suddenly, then us losing my Pug Tazzy, who even though at times they appeared to be a bit of rivals, he misses her so much.... and he also "fears" I will leave and not come back. I see it in his eyes, when I tell him I have to run errands, and I will be back soon.. and then when I come home, his is almost crying, standing at the door, and I can tell he is so relieved I am home again... I've really tried to give him even much more love and attention that before.... just so he knows I am not leaving him.... but I feel with the right new "fur-kid" he will once again have a playmate, and someone here to keep him occupied when I have to run errands.... and that of course is just the "top" layer of many layers of life... almost like these two "holes" in my thighs... so many "top layers" of my skin look like they have "eroded" - and it is one frightening sight to say the least... I am also extremely concerned about Jim and his own mental and emotional state, after such a terrible let down with the trial.... ALL OF US AGREE even our lawyer that their were "lies", "people were paid off" to lie, and the driver and owner LIED under oath.... and then I still question the "jury"... there was something terribly wrong with them... I saw it, and I was only there a couple of hours... but I saw it in their faces, and it was almost as if they had made their minds up even before the trial began... a "corporation" again us "individuals" and if they are "dirty" then they could care less about the lives that have been destroyed by their own employees recklessness on the road, his driving while TALKING ON A CELL PHONE, and on so much more... BUT THEY have to live with themselves every day... and if they have any "heart" and maybe they just do not... it will be a burden they carry around forever and to their own graves. I do know from doing a search online about the company, that they have lots of "not satisfied" customers, who say online they have lied and cheated them... so that tells me enough, plus they were TOO SURE through this entire mess, they were not willing to budge an inch, offer a settlement etc... because they PAID OFF people to lie... no way, no how these "so called" witnesses, "seen" that accident, where the car was, whether the hood flew up or not, and I've said it all along.... those people were "found" before I even got the police report and paid to lie... I know it in my heart, I just cannot prove it.... so let them stew in their own deceit... what goes around.... definitely shall come around... I have watched it happen way too many times... I never have to do a thing, but sooner or later those who harm others lives, do pay a price....

Saturday, November 7, 2015

Abscesses, Catching you Up, and letting you know that I shall be back very soon... please continue to follow me.... the realms of life, autoimmune illnesses, Lupus, Sjogren's, surgeries, pain pumps, & the "trial"...

I apologize for being "MIA".... LOTS of stuff happening here... for one I had BOTH abscesses incised on Monday... the "1st" one got infected again, even though we thought it was okay, then the other lump on the right thigh got horribly abscessed, so the surgeon opened the both of them up on Monday... IN HIS OFFICE!! Do NOT even get me started, I am one tough cookie when it comes to pain, and procedures, but I should have been taken to outpatient and put under sedation... I have pics of them on my FB page, and honestly the right one looks worse today than earlier in the week.... I am on antibiotics, but I do not think they are helping the right one at all... I have been on Rifampin and Bactrim now for weeks and weeks... and they have helped the left thigh, but as I said the right one is swollen "angry red" and HURTS like heck to have to open them both up at least 2 times a day and go inside them with cotton swabs and peroxide to clean them out.... and I fear I am running fever.... and some may know that my "internal pain pump" also went into a motor stall... well they had information the first time it "re-started" itself, and my pain doc reset the meds in it, and that lasted about 5 days... then a week ago yesterday, the Medtronic Rep drove from Dallas down here and met me at the hospital to "turn the flow down to nothing"... so just in case it starts again, I won't get the meds much at all, and then they have me on strong oral pain meds for now... so I face surgery to implant a new one, but no way will they touch me in surgery until these infections are cleared up... and gosh knows when that will be... then the "trial" was this week for my soon to be ex-husbands wreck, in March 2014, when I was in DC with the Arthritis Foundation. I did not go at all until yesterday mid-day. I testified, which meant reliving the entire ordeal again... not fun, but then I drove back home. I did not stay, honestly my doctors would have freaked had they known with my current physical issues, drove 35 miles plus to downtown Dallas, went into a "germ filled" courtroom, etc... but I felt I did need to say my own part of all in this.... in so MANY WAYS this horrid nightmare of a wreck, totally "wrecked" my life, physically, mentally and emotionally, and in some ways even more than Jim's... there is a great deal of the first almost 3 weeks, he does not remember at all... and he does not remember a moment of the wreck in itself... anyway, due to all of that, along with my Mom and her sudden new medical problems, I have either been here just a tiny bit, or not here at all... usually on the sofa when I can be, or taking her to the doc, or myself... and then to the court house yesterday for a couple of hours.... anyway, I wanted to catch everyone up a bit... I have felt badly about not being able to "share" posts, and put things up on my blog over this past at least a week or more... but honestly, I have felt so lousy, and with the trial and all of that... plus I am trying to get well enough to "adopt" a new pup... I still miss my Tazzy so much, it just breaks my heart each time I think about her sweet face.... so hopefully after next week... my hopes are there is a huge load lifted off of our shoulders... and I can "hopefully" try and find some way to put my life back together... anyway, I thought the comment was cute Tiff.... and thanks all... also hope to be back here, posting, sharing, and getting back to what I love to do most... my advocacy and activism...


I am extremely concerned about the right thigh and the abscess... it is so totally red, swollen, and it is just a nail biting horrible pain to have to clean it all inside with peroxide and cotton swabs... but it has to be done, and either I do it, OR I do it!

Anyway, to ALL of my followers here, please forgive my brief absence... and I shall be posting more hopefully from now and forward... by the way, the damned pain pump keeps turning on and then stalling... each time it does that, my "side" starts beeping... that was a real "hoot" yesterday at the trial... everyone would look at me... I had to wonder what they thought... they were supposed to have been told about it, but I think that did not get mentioned, thus it was kind of funny to see people staring at me....

Sunday, February 22, 2015

How to find "Center" - Deal with "Disappointment" - and Feel Like You are "contributing" to Life, when AI illnesses try and take over...

Not overly thrilled this morning. My Pug woke us up about 4:00am sneezing! I bet she sneezed 25 times. I got her over to me, and pinched her nose really softly, covered her up and started rubbing her head and neck. She finally stopped sneezing for a bit, then began again. I decided to just wrap her up and put her out on the sofa, and I would stay out there with her. Then of course my other one Bubba, was crying, he wanted out there with us. So, I got him, and wrapped him up in the bends of my knees like he sleeps all the time, and FINALLY they both went back to sleep. I tried to, but then I thought it appeared to be getting light outside, so I went to get up. Then headache and nausea hit me all over again. So, I went and got the last little drink of "coke' (the original full Coke will most of the time help my headache and also settle my stomach some). I didn't have much left, so then I poured me a glass of green tea, and debated about getting back on the sofa. I had been on the run yesterday part of the day, and it was also my Orencia day. Not sure if some of that made me fatigued and not feeling well or what. Anyway, I went in the afternoon around 3:30 om and had my hair trimmed back up so it would style correctly. And she sprayed a bit of some kind of hair spray on it. I don't use much hairspray and the one I have I use mostly because I love the way it smells. But, whatever she used, really got to me. Even though she didn't put much on, right away I began to feel the headache and of course then the nausea coming. There are certain smells, even in really good perfumes and so forth, that just don't settle well with me. I guess due to having migraines all my life, and now that my stomach really acts up so much, the combination of the two just put me in a fluster last night. Then the dogs, didn't help.... having to tend to them... just like kids at times, I was up a couple of hours getting them settled back down. Now today I feel like I am paying for it. For some reason, and I am not really sure exactly why, I am just having a heck of a time "dealing" with life in general. Not feeling well makes it worse of course, but I am not really depressed, but I am just not really thrilled over anything at this moment. I think I got bummed a bit about the weather being so crappy and we didn't get to go to the Casino last Sunday, may be part of it. Plus I just feel as if everything I attempt to do, either takes me forever, or like a shower, sometimes by the time I take one, get out, dry my hair and get dressed, I feel worn out and it seemed to take 8 times longer than it used to. I think I was hoping for 2015 to be so much better than the past year. And for sure, it is nothing like 2014 at this moment. But, I believe I thought I would have MORE GOOD days, and less bad ones. I think I was wishing for the entire ordeal with the wreck to be over and done with. The thought of having to drag out this "lawsuit" crap another almost year, really is not settling well either. Even though it does not actually in many ways effect our "daily" lives, it does in others. I feel we are in a "holding pattern" not knowing what will happen if anything, wanting to get the mess over with and not have to even remotely think about dealing with a trial... that could drag things out even longer, and the longer that drags out, the less our lives feel any type of "normal" to me. Even though it has probably been more of the "economic state" of our nation that has effected Jim's clients, in many ways, I know we are losing a couple of clients more than likely due to some ways all of this effected how Jim tries to work. With all of his own pain, and dealing with his balance, he can't drive, and who knows when he might, if ever, along with all that faces us both, it just feels like we are totally unsettled every day that dawns. I REALLY wanted us to go to Vegas for our wedding anniversary. That will be in April on the 6th. It will also be 10 years of Dad's passing away on March 27th. Time flying by also really is getting to me. Each day that I don't feel well, means another day I don't get to live my life to the fullest I want to... (wow, I just have this eerie feeling of deja-vue) like I've written those exact lines before, in the exact place... wow that is a strange feeling for sure... each and every element of our lives have been ripped, torn, mangled, and we try every day to find some kind of "normal" again. Yet, there is not one thing normal about life for us really whatsoever. I am truly pissed at myself, because of all the things I've wanted to do in 2015 the number one was to finish writing my 3rd book. I find myself, either not having the time, getting interrupted with other stuff, then it takes me forever to get to where I left off, and when I finally do get to write, either I feel what I am saying is boring as hell, it's not how I want it to come out, or I am all over the place, rather than focused, or I am either too tired and fatigued, or I have a bad headache, or a flare going on... the list is endless. What makes that worse, it ALL of it sounds like an "excuse" for not getting the book written. But, when I look around at our home, all the things we need to finish, that we have not been able to, from painting the outside to finishing the floors in the bath and kitchen, to completely doing the laundry room walls, to remodeling the music room... a billion and one things we want to do, yet one or both of us physically are no longer able to do.

Just as we find ourselves in a rut, in the same old place we have tried NOT to be in, to break old habits, like for me, POSTING HERE, and just putting a link from here to Facebook. Not writing it all in Facebook. That is not how I want to do things, yet old habits just don't go away overnight. Plus "this" also is something I need to put in my book. It is how every aspect of daily life is totally surrounding, or surrounded by something to do with autoimmune illnesses. Either physically, mentally, emotionally, somehow, someway, I feel these diseases rule over my way of living. People can say, "just put that aside", do some Yoga, don't worry as much, blah, blah blah... you can bet that is all wonderful advice, but not easily followed when you have chronic illnesses and chronic pain. They are like a "plague"... they just don't "shoo" away like flies off of a pie. They mix you up in a blender, or roll you around like dice, then spill you out all over the floor and you are trying to pick up the pieces and put them back together again. Believe me, Humpty-Dumpty has an easier shot at it, than the majority of us with any type of autoimmune disorder.

I can go from feeling like a thousand bucks, to feeling like a penny in the middle of a busy road. Ran over time and time again. Worse? Not even knowing why? The illnesses, medications, new symptoms, your mind playing tricks on you? Maybe you are finally just going crazy, and insanity will be the "new black" (or possibly going to the "nuts house" in your little black dress!)

Often times I want to act as if certain things in life don't really upset me, or make me feel disappointed. Yet, inside I realize that is not true at all. I am totally disappointed with so many small things in life, that I would feel as if all I did was whine, mope, fuss, gripe and bitch if I was show to how I truly feel in regard to our daily living.

I find myself disgusted with our world in general. I am also very sure I am NOT THE ONLY one either! All over this nation, and our globe something horrible is happening. People are more disgusting everyday. When you turn on the nightly news, and 90% of it is "bad", how can you not be effected by those things? I know that as population grows, of course it seems that we have more bad than good in life. The needless shootings, looting, those taking advantage of our elderly, poor, and people that may lack the education... war, let's face it, whether (and I am to the point of being sick of hearing "boots on the ground") but if they are or not, we are still very much in a constant state of "war". Hell, we are at war all too often with our very own nation. Rather than work together for the common decency of everyone, the greed, the power hungry, non caring, lack of any morals, and horrid attitude many have for their own kind, humans, is purely disgusting. We wage war right here in our streets... What makes that even worse, is often times it is family members that take their own flesh and blood, then kill themselves. I have heard suicide defined as being a very "selfish act". I didn't understand that until over the past twenty years or so of my life. Or course it is a very selfish thing to do. If you have parent's, spouses, friends, brothers, sisters, and other family members that love you; then you decide not to deal with life anymore, and you "leave" this world in a manner of taking your own life, you have now cheated all of those that love you. No longer can they see you, talk to you, be around you... you have taken away something that was so precious to them, YOU! So, it is a very horrible way to do those that love you. I know with suicide victims, often times those people are not considering that they are being selfish, they just want to end what pain they are in.

Friday, February 13, 2015

The Ever Spinning World of Lupus, RA, Sjogren's and All of the Hectic Life Things to be Done

Today, like many others I have so many decisions to make, things to do or not do and put off, things I want to do, albeit before our weather goes to heck in a hand basket as the saying goes, and so forth.

I feel here it is another Friday, the weekend almost here... by the way
                     HAPPY VALENTINE'S DAY TO ALL TOMORROW!
Hope you and your sweetheart have a wonderful day! Even if at the moment you may not have someone special to share the day with, share it with yourself and do something nice for YOU!

I have just found out that I have an opportunity to meet several of the ladies of the IFAA that I am also an Active Volunteer!They are going to DC also the same time I am for another non-profit. So, we are thinking rather than me fly out on Tuesday, which was going to be hard on me anyway by the time I land back in Dallas, then drive 70 miles home, and it will be around 10 pm ... and my night vision is not all that great. So, I could be more rested, plus come back earlier in the daytime, just after rush hour, so that would be awesome also!!! So, that is one of my decisions and I really need to make the change TODAY as far as my flight. We were thinking about going to the Casino on Sunday and maybe even spend the night. But, the weather is supposed to be just hideous. 100% chance of rain all the way there, and then even if we spent the night, the same on Monday. So, we may postpone that and go the following weekend, although it does not look much better right now.

I wanted to stay here at home today, and in fact gave up a chance to go ahead and have my hair trimmed, but I was a bit worn out, plus have my head spinning in about 30 directions. I NEED to begin getting more and more writing on my book completed. It seems there is something everyday that takes my mind away, so I am either gone physically doing something or I am mentally too tired by the time I can even get to the computer.

So, life goes on and on...  here is a post from Facebook I wrote talking about time, and just how quickly it passes you by....

Before things get to hectic! I have about 25 "irons in the fire" right now!:) I wanted to wish everyone a very nice Valentine's Day tomorrow! I happened to have "almost" been a Valentine's Baby. My birthday is Sunday on the 15th! Not really loving the fact I am "half-way" to 60... yuck that sounds old! Yet, I feel my "work" here is not completed thus I must accept the fact, the only way to be "here" on Earth and do what I love is to try my best to accept that each year will make me a bit older. I also hope that in with that age, I continue to "learn something new" every day, and my hopes are that I will be able to somewhat have a bit relief with the right medications from the Lupus, RA, Sjogren's and so forth. Even if it means surgery down the road on a couple of joints, if it keeps me up and on my feet, then I will be a happy camper. These years seem to have just flown by too quickly. Jim & I celebrate 10 years of marriage in April! It seems like yesterday we met on Alki across from Seattle, overlooking the "Sound" and all of the beauty that is there. I still miss it and always will. I seemed to be "healthier" there than any other place I've been to. Not sure if that was due to the weather and climate, or if I just had not gotten into the horrid symptoms of the autoimmune illnesses. Unfortunately, I had lost my job, right after Jim and I met. Actually I resigned. And that was really due to ongoing health problems, mainly Migraines and severe conjunctivitis. I could not get rid of the eye problems. Each time I would heal up, in a couple of days it would re-appear, and since it is so contagious, plus I would not have been able to do the type of work I was doing at the bank there, I began to miss lots of work due to health. Honestly, it was the STRESS of that job, and the two "supervisors" who were "witches" and that is putting it mildly. The stress each day of dealing with those two, along with the tedious realms of dealing with Real Estate Files, and all of the paperwork in them, the job was very, very stressful without having to deal with two backstabbing, back biting, lying women. They had been "friends" for many years, and had both worked there many years, thus they spent their time covering one another's butts... But that is past, I am back in TX now, in my hometown... and I've let go of the anger and bitterness that I first had right after having to resign. Later, in fact, I've become online friends with one of them. She was my direct supervisor, and since then she had a very bad car accident and bless her heart, dealing with lots of pain from the accident.... and the bank actually closed since I left I found out. Anyway, time has gone by much too quickly. My 1st Grandson was only about 5 weeks old when we arrived back here. He and now his younger brother are both in school. When I think about just how quickly life passes us by, it makes me want to make sure those I love, and I care for dearly, whether family, spouse, and friends... that I let them know. So, if you have a "special someone" then I wish you a very beautiful Valentine's Day together. If you are alone right now, then do something very special for yourself tomorrow!!! You can "love" yourself and show how much you do. Whether that means a special cup of coffee, a walk if it is pretty, buying that "something" that you've wanted and so forth... Enjoy! Don't let life pass you by.... as one of the songs in the country songs lists.... "No Time to Kill" by Clint Black... and then another one is about how quickly your child grows up, becomes a parent themselves, and goes on to have their own family, all within a breath's space... in the blink of a eye... time can pass you by... and as my favorite saying out of a song in fact goes... (the chorus that reads "When They Carve My Stone All They Need to Write on it... Living in A Moment You Would Die For" that is what I want on my Head Stone someday - the chorus of this song....
sung by

Ty Herndon

Living in A Moment

Well the world just lost two lonely people
The world just lost two broken hearts
The odds were against it but baby here we are
In our own little place in our own little corner
This old cold world just got a little warmer
For the rest of my life I'm gonna hold you in my arms
And when they carve my stone all they'll need to write on it
Is 'Once lived a man who got all he ever wanted'
Tell me something, who could ask for more?
Than to be living in a moment you would die for
If you never get rich on what money can buy
It don't matter to me, I'll tell you why
I've got it all when I'm holding you this way
I'll live to love you, I'd die to keep you
Safe inside these arms that need you
I'll be loving you with the very last breath I take
And when they carve my stone all they'll need to write on it
Is 'Once lived a man who got all he ever wanted'
Tell me something, who could ask for more?
Than to be living in a moment you would die for
Ashes to ashes
Dust into dust
I'll lay beside you
Forever in love
And when they carve my stone all they'll need to write on it
Is 'Once lived a man who got all he ever wanted'
Tell me something, who could ask for more?
Than to be living in a moment, loving every minute
Tell me something, who could ask for more?
Than to be living in a moment you would die for
Living in a moment you would die for
Oh baby, I'm living in a moment I would die for
Oh, living in a moment I would die for

Monday, October 27, 2014

#Hashtag, Lupus, Blogging, Life, and the Life of everyone who deals with Autoimmune Illnesses - patients, caretakers, family and friends...

My dentist said it was NOT an invasive as a bone graft, and once that is done, then around the middle of November I go back for another set of X-rays to see how well the jaw bones are filling in and healing where the teeth once were. I pray they will be ready for the mini implanted pins and I will get over all of this dental mess once and for all. It has just been not only a pain in the mouth, the wallet and has been a massive pain in the butt. Anyone that ever has to go through the entire process of having all of what is left of your teeth pulled, to then go directly to dentures, and them NOT hold as well as they should... YET, you must wait patiently or for some impatiently... for the bones to "fill in" where the teeth were before you can have the "mini implanted" little bars to hold them secure... I HONESTLY FEEL YOUR PAIN AND SHARE YOUR NIGHTMARE!!! It was not really having the teeth that were left pulled 5 at a time... the "laughing gas" helped to get through that. Besides I am not afraid of needles, even though they are never pleasant in especially the roof of your mouth anywhere... or even the pulling of the teeth in itself. Other than mine being tough as hell to get out (you would think the Sjogren's would have had them degenerated enough that they would come out easier. That is not the case. Mine had a tendency to break, split, fly over the room, and give the dentist a run for his money, as my Dad would have said... But, that last go at the rest of the front teeth, which I had 11 left! Then to have that sewn up and put the dentures right in over the top of all of that where they were pulled... was not a great experience either... Honestly, I still have soreness around my lower part of my nose, and upper lip, even the "hinge" of my jawbones on one side wants to almost "pop" out of place at times. Many people say I am "LOUD" when I speak, but it is surely NOT from my mouth itself being big... in fact it is just the opposite... my mouth is so small, that is why my teeth were so crowded together, even after 2 or 3 molars being pulled thinking I would be getting braces years and years ago, and my 4 wisdom teeth laying cross wise down in my mouth having to be cut out because there was no place to go to pull them out.... I have always had to use a small fork and a small spoon to eat with... there is no way I could try to get a larger spoon in my mouth... like normal people do.... I got my "mouth" from Mom's side of the family as far as bone structure - a great deal like my Grandmothers on the maternal side... yet I got my Dad's side of the family - Teeth... which we all my son, my Dad, My half -Brother, the larger two top teeth in the front, and just a bit larger teeth that just did not fit very well into a smaller framed mouth such as mine. I went for eon's hating my teeth, and you would very rarely see me smile in front of a camera. So, I did get my wish of "beautiful teeth"... after I was 54 yrs old, and had to have mine gotten rid of and had "falsies" LOL.. put in... but hey, they are MINE and they are beautiful... sometimes we get what we want, but just not in the way we expect it to.
Thus, I am trying to once again be patient, hope that tiny little hole that is driving me nuts on the top right hand, where there is that little oral-maxillary fistula or fissure... that just makes it sound HUGE, so I don't really like calling it that , but that is the
medical term for what it is.... By the the while I am still trying to figure out the           #hashtag business of #rhia or #lupus or #rheumatoidarthritis or hummm what about #drcampo wonder what that would bring up... I do have something else I am thinking about doing... and if you care to join in, I would love for you too... One of the bit online health sites had a "blog" kind of contest that everyone could participate in for 30 days during a certain month of the year. Well, somehow I got my wires crossed (what is new)  so I had posted here and on my blog all about it. Then I got to seeing some of what I had actually found online was last year during a month, not new for this year... so of course after finding out for sure from someone there, I took all of it down from my FB page and from my blog. BUT... I had this idea since I sometimes have a difficult time trying to decide what "subject" to go with and write, I would use some of their ideas that I enjoyed thinking of writing about and doing for that the month of November on my own blog. I may mot be able to do it exactly ALL 30 DAYS... but it would be fun to just pick one & try and do one a day and write about an entirely different subject each day. NOW the FUN part is I would LOVE TO HAVE SOME OF YOU GET ON THE BANDWAGON and POST also on my blog... I could post the original idea, along with my "views" on the subject, then have each of you that wanted to - to put yours under it where you click to go and make a comment!!!! I may even make one post and just keep that one going all through the month, doing the same... so if you would like to joint me, feel free to take a look at my blog. I will post a few topics to get started with, and if you can think of something you might like to blog about or read about feel free to private message me here, or on Google since Blogger is part of Google... and we will see how much fun we can drum up :)  I will decide whether to begin "here" on a blog post with the ones for November OR whether to put them on another page... I will let you know for sure this week sometimes....

Perfection we find in one rose... and perfection we seek always in ourselves and into what we feel inside is meek....

Monday, August 25, 2014

Almost Forgot - Link to FB to See my New Teeth! Also other infor under a post about down!!

https://www.facebook.com/photo.php?fbid=10203697836581272&set=pb.1078281265.-2207520000.1409002262.&type=3&theater

I just had to show these off. I will of course get a much better pic of myself with them next time I am dressed and have my makeup done etc... They should be incredible for the amount of bucks they cost... and I still have more to go in about 3 months. In order to stabilize especially the bottom denture, due to the Sjögren's, we will have to do the "mini" little posts implants that the dentures will actually slide down on to keep them in place. That way I won't have to be so concerned about them staying in place, plus I will be able to eat like a normal person again hopefully. I know all of you are busy with kids back to school, etc... vacations ending, and back to where we all go once Summer Time comes to a quick stand still.... we are still in the middle of the law suit about the wreck... Jim finished PT/OT yesterday thank goodness... that was 8 weeks of 2 times a week that took lots of time up that I lost when I could have been doing more useful things. But, I kind of insisted I take him for the most part, so I made sure he was taken care of and not having to wait on some transportation to pick him up early, and then be late dropping him home... but he if he does decide to go back for another round in the future it may be that we have the transportation bus pick up him to take him and bring him home... I have LOTS of catching up to do, both on the house, on the computer, for my writing, for my advocacy..... ad all of the other million and a half other things I need to get done..... I promise to be "fixing" my blog better... I hope now can SEE where to POST a COMMENT... am trying to make it larger and a different color so you know to click it..... thanks all for standing  by myself and by Jim and all of my family through this... you guys and gals are the greatest....