Medicare Reform - NOT for Just the "Elderly"!

I join in this for several reasons. One of which is that even though many of us at the time when we are much younger in life, never think about needing your Medicare and Social Security benefits. You are working, raising a family, and everyone seems "healthy"... so needing something such as Medicare does not even probably come up unless you are talking with your parents, the elderly people, on TV or in the news. BUT, I can also attest, you NEVER KNOW WHEN YOU will be the one that needs Medicare... and not at 67 or so but at 35, 40, 45, 50 get my drift??? Life can turn on a dime, and all of a sudden you are saddled with a chronic illness that no longer allows you to work. So, where do you go? Eventually you may lose out on your insurance as far as health wise, and possibly not be able to even make a living, much less pay for high medications, doctors, tests, hospital stays... and you are in a place of living hell!!! It can happen and IT DOES HAPPEN!! I am walking (sometimes crawling, Living PROOF) that life is not always what it "should be".. or what you thought it would be... withing a breath's space, things can change... and when you are needing Medicare the very MOST in order to just have the vital doctors and medications to sustain you... and medications run 1,000.00, 2,000.00... or you have MANY 20 or more medications some of which are 300.00 or more a MONTH!!! There is NO WAY most anyone can afford to pay out of pocket... so we need change.... change for the ones growing up and working now... in order that when they retire, Medicare and Social Security is still there for them. OR in a month, or year, or a few years down the road when all hell breaks loose, and you find yourself too ill to work, too broke to afford health insurance, and you need "those Medicare benefits"... that is when it will dawn on you... Gosh I wished I would have stood up for CHANGE!!!!!

These three posts are what I sent in Facebook and in Twitter to my House of Representative Member and my Two Senators.... it is time to take up the lead and make change for the good of all when it comes to Medicare!

WE must stand up and let our Congress officials know how we feel when it comes to our health concerns, and how Medicare needs to be fully reformed, and will be here for many many years and people to come. We deserve great care, and our physicians and medical people that DO A GREAT JOB should be taken care of. Those physicians and other medical "professionals" who are not willing to be there to truly HELP patients don't deserve extra benefits or compensation. We have a GREAT DEAL many AWESOME DOCTORS WHO GO ABOVE AND BEYOND THEIR JOBS FOR THE PATIENTS!

http://fixmedicarenow.org/patients/

Sjogren's, Dentures and the Ordeal of the nightmare money wise and pain wise to get "new teeth"...

Some Photo's of Me Recently after getting my dentures - I had never been one to smile in any photo's. I always hated my front teeth. I had "genetically" inherited my top two front teeth being "large". My Dad, my half-brother, I, and my son... and I am sure some of the other family on Dad's side all had the same. Plus my bottom teeth were not straight, and I had a 4 wheeler accident at 25 yrs old, that snapped the bottom half of one of those top front teeth off. I had it "built onto" and it stayed like that until earlier last years 2014, when Sjogren's took my teeth, quickly and quietly. It seemed it quietly came into my mouth, and within 4 months literally rotted about 8 of my teeth from the inside out, just leaving a "shell" that then broke off at the gum line. After having that happen about 4 times within 2 months, I went to see another dentist, who did a "surround" type of X-ray that showed just about every tooth I still had were also going to do the same thing. It was just a matter of a brief few months, and all of them would be falling out at the gum line, leaving me to have to have them pulled. So, I began to "weigh" my options that honestly, were slim to none. Even though it is an "illness" that literally rotted my teeth, and had nothing to do with my own dental hygiene etc... I could not get my insurance to pay one red cent on any of the massively expensive and time consuming work it would take to get me over the "Sjogren's rotting teeth" out of my mouth.

You are talking about somewhere in the neighborhood of 10,000.00 to actually more like 15 to 2o THOUSAND DOLLARS of dental work. I had to have ALL of the rest of my teeth pulled. Then due to my bone structure , the Sjogren's, the medications I have to take for the RA, Lupus and so forth, had also had its finger in the loss of every tooth in my mouth. That began about February 2014, and I still am not completely finished with the entire ordeal. After pulling sets of 5 to 7 teeth at one sitting, then they made my dentures, and pulled every last one in the top and bottom that had been left up front and visible. So, that was 11 TEETH in ONE sitting, and then they put the DENTURES RIGHT IN OVER THE TOP OF ALL OF THOSE STITCHES AND PULLED TEETH!! Surprisingly, it was not as painful as I thought, but for weeks and weeks and weeks, and even now I struggle about eating. There are certain things that in no way can I bite into or eat. Most everything has to be finely chopped up, even tomato and lettuce. I have to tear most things apart  in extremely tiny pieces. With the dentures I also don't have as much room in my mouth as I used to. Plus, I still lack going back and having "mini implanted little screw like devices" put into my lower jaw in four places, so that my bottom dentures will fit securely on those and not be moving around all the time. There is no way, I can keep them in place, without having those put in. So, that is another at least 3,500.00 for the four little pins and then adjusting the bottom dentures to fit down over those pins when all is finished. It is pure insanity, money wise, time wise, pain wise and the amount and length of time it takes to complete the entire ordeal. So, now after so many years of wishing for "beautiful teeth" so I can smile, I have them. I just never figured it would be because of some disease that ruined my own, and I would have to deal with a full set of "false teeth" or dentures. So, when you "ask" for something, you may get that "wish" fulfilled someday. BUT, remember it may NOT BE the WAY YOU HOPED for IT TO BE! So, here are a few new pics since my dentures have been put in.   

LOL!!!! Notice I STILL have a difficult time "smiling"... so many years of not because I hated my teeth... so breaking the habit is hard to do.  Rhia













                                                  

WEGO Health Awards Judging, Chronic Illnesses, Pain & The Brave People That Find the Strength and Courage to Talk, Blog & Write about it

As I worked on my WEGO Judging over the past couple of weeks, I've found that there are some incredibly strong women (and men) out there living their lives everyday, with one, two, three and more chronic illnesses, syndrome, and pain. They have also been through the HELL of hospitalizations that lasted for months, endless surgeries, transfusions, being not even able to eat and being fed through an IV (as I did in 2010), and some of them like myself, at that time the doctors really DID NOT KNOW what was wrong with me. My own PCP has made the statement since then on several occasions that he was extremely concerned back then I was going to die. Endless numbers of specialists came to see me... most of them were of a foreign decent, and frankly I could not understand what they were saying to me. Many of them at the time, didn't really know what the hell "Lupus" was. They blamed some of my illness on the Lupus, yet, they also were treating me for what they told us later was a "collapsed" bile duct. It was literally leaking poison into my abdominal cavity, rather than it going out of my system and being filtered out by my intestines, and out as it should. I had several "tubes" running outside of my right side. Later I had to even come home with them still in place, and we had to watch the fluid that came out into the bag, to make sure it was becoming more "clear" and not bloody etc. I went through that for several weeks. For at least 6 weeks I never put a drop of food or anything to drink in my mouth. There was a huge bag of "nutrients" that was white, and I was told it was a certain concoction mixed up by the pharmacy for me. I went through nights that I barely knew where I was. In fact, I spent mt 50th birthday having yet another surgery. Jim, my son, and my Mom were there because they had told me to "call my family" in, "just in case".... "Just in Case"???? I had at least 8 or 9 other IV bags hanging and pouring into me, pain medications that I watched the clock for and begged each moment I knew I could have more.... I really have never "told" this entire story, from start to finish, here or on my blog. I have put bits and pieces about it over the years on both, as well as it will be in my book. It took my system weeks to even be able to withstand a regular sip of "Coca-Cola in it. It would put my entire stomach and intestines into a "tailspin" and the next thing I knew nurses had to come in and change my entire bed, put me into the shower (dammit they never warmed it up enough and this was the middle of February and one of the coldest Winters in TX since I had been back).... any thing that was "food" "stunk" to me. Jim would go and try to find something I could stand to even remotely put into my stomach, and even certain kinds of bread smelled so bad to me there was no way I could take even a bite. Why I am telling this now here, I am not sure. Probably due to one of the blogs I read over the past few days, and her own battle with what later was diagnosed properly as Crohn's. But, more than that, it seems each year that February rolls around, which my Dad's birthday was on the 2nd, Ground hogs day, and mine of course just passed on the 15th, almost a Valentine Baby.. and it brings all of those weeks and weeks, and honestly months back into my memory. How ill I really was, and how it truly it is a miracle I am here today to type about this.... so ALL of you... everyone of you that have the stamina, bravery, the "guts" (no pun intended), the wear with all, strength... and many more descriptive words to say how incredible you are to tell "your" story. Whether it be autoimmune in nature, arthritic, FM, MS, and all of the other Chronic Illness and Pain so many of us endure... so WE can go out and tell others "it is okay"... you are still you.... you are not "less than", that life can be full, and fun... you just have to sometimes decide upon a "new kind of normal"... that is what I have to do, and even now... "normal" can change at any given time... I am THANKFUL, to be here this morning and able to tell a portion of my story... and I am thankful for my family, my spouse, kids and Mom, that support and love me, even though I feel like I disappoint them at times... and my true friends here that also love me for me... sick, well, mad, depressed, happy, or whatever I maybe at that moment, those out there know I mean you... that support and love me unconditionally, with Lupus, with Sjogren's, now with dentures and not my teeth, with the joints replaced, and the pain pump hanging from my right side... I am still "me"... and I feel blessed.... thank all of you for accepting me no matter whether brain fog hits, or I find myself on the sofa for the day, or I am up cleaning and doing "normal" things.... I am blessed.

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.

Dealing with Aging, Chronic Illness and Another Birthday today!

All of us have to deal with aging. It is just a fact of life. If we are here on this Earth, we naturally are a tad bit older each day.

I am dealing with my 55th birthday tomorrow, Sunday the 15th (almost a Valentine's Baby). I always have a difficult time dealing with how quickly these birthdays seem to come around. It feels like I just celebrated one, and here is another one popping up.

When you have a chronic illness (es) and/or are living with chronic pain, I feel you have more of a feeling of "desperation" as the days go by. It is of course a known fact, if you are chronically ill, with just about any type of disease, that can lessen your life span depending on which illness, and how well it can be managed.

So, with someone such as myself, dealing with Lupus, RA, Sjogren's, already having two heart attacks, etc. the possibility of me living my life out to my 90's or less can be something that you have to admit may not happen. No one wants to think about growing older, and then passing away. We have so much LIFE to live, none of us want to check out of the life hotel, before we have completed all of the things we want to. Maybe it is to see your kids, grandkids, and great grand children grow up. Maybe you have things like myself, a blog, a book to write, people to see, family that you of course don't want to leave, and hobbies, activism, volunteer work, traveling, just the daily parts of life such as they are. with Autoimmune Illnesses, days may not be the greatest. You have some that are full of pain, and you would prefer not to deal with. Yet, you usually would rather deal with the pitfalls of chronic illness, than the opposite, which would be to pass onto another life.

I didn't get to finish this post yesterday, so I will finish it off for now with what I have written on Facebook this morning. I am so fortunate to have so many people around the globe that lift me up in faith, hope, and prayer... and I want all of them to know how much they mean to me.

This has been such a wonderful day so far. Other than waking up early this morning with a freaking horrid headache, that then upset my stomach as usual, I am having an incredible birthday! I went yesterday and got 3 shirts and a purse at Beall's for less than the price of the purse itself! I had a gift card from them for my birthday, plus some other good coupons. Then Mom and I stopped at the Dairy Queen and got burgers and fries. I brought ours home, so that was Jim and I's Valentine Day special. :):) Mom gave me a beautiful card, and what she wrote in it brought tears to my eyes. She has always been here for myself and for Jim, especially after the accident. Then Jim's Mom also sent me a card, and money! :) I had ordered something on Amazon that usually I never would have even tried, but it came in yesterday and they fit perfectly! I got 5 new bra's in the colors I needed for like 25.00! Plus Jim gave me a beautiful new robe this morning!!! I needed it so badly. I was ashamed to even wear my old one, it was definitely worn out.... then I got a call from Amanda Batson- Matheny​ and a bit later from my son Jason Harber​ which made my day to hear their voices and have them call was a wonderful treat... I also went and got us "no-no's" as I call donuts... we have a place just a few blocks away, and I could sit there and make myself sick, eating them. They are so good!!! :):) We were supposed to head to Winstar today. But, the weather is supposed to begin getting lousy today, and it is already really cloudy, and we are expecting a high chance of rain today and tomorrow, plus colder temperatures. So, we decided to wait to go the the Casino when the weather is a bit better. Driving in rain does not bother me if it is not too far away, but being with the idiots going through Dallas in the pouring rain, is not my biggest thrilling adventure! So, the rest of my day will probably be just relaxing with the pups and Jim. Probably going to watch a movie or two, and other than that, try and put all of the "everyday" worries aside today and not think about all there is to do, errands, running here, there and yonder... but just have a day of peace with these 3 I have so much joy with ... the pups can make us laugh no matter how lousy we feel, or how badly the day goes. Bubba Gump will raise up on his hind legs, with his front paws down in front of his face... and those big eyes just saying Mommy, rub my tummy... or the way he loves to watch television and movies. Tazzy, bless her heart, can still do some things to make me laugh... but she is really beginning to get a bit "feeble" in so many ways. She is I believe 11 years old. Jim gave her to me as a Christmas present while we were living in Seattle. That was the Christmas of 2004, because she was a year old when we got to TX. So, time has also flown by with her. It seems just yesterday, I was visiting her, with her brothers and sisters, trying to decide which puppy I wanted. She came running to me, not bigger than my hand... then ran over to Jim and began to give him kisses. From there we knew she was the one!!!! :):) She was not even old enough for me to bring home. I had to wait a week, and she got her last puppy shots, then we picked her up the next Friday night, just before Xmas. Life has just passed by so extremely fast. Day will have passed away 10 years ago on the 27th of March. Mom will be 80 in August. And Jim and I have been together now for 12 years, and will be married in April 10 years. I would not have missed one moment ever so far in my life, and I am so very fortunate to have family, a spouse, two pups, and so many friends to keep me from going insane at times. You each bring something special to my life, and even if we never were to meet in person, which of course many of us might not, you are still as much a part of my life, as if you were right next door... thank you... each and every one of you, for giving me strength, courage, hope, faith, and on the right path in life... I am blessed and overflowing... Rhia