#HAWMC - "I feel best when..." WEGO Healths Writers Challenge for April 14th, 2015

"I feel best when.."


I must say, as silly as this may sound, trying to truly tell someone when I feel "my best" is a bit more difficult than you might think. We all have our "moments" where exactly as the "prompt" says, when we feel we could take on the world. Yet, when you are dealing day to day, even moment to moment with chronic illnesses, pain, doctors, medications, insurance, pharmacies, those moments seem to be few and far between.

I hardly mean to sound "depressed". That is not what I meant. But, I often feel disillusioned by the progress I see in my health matters, as far as how my medications and physicians are helping me to "feel better". We all too often see these ads on television, all of those ads we are bombarded with online and via email where this, that or the other is supposed to be the "break of the century". The medication is thought to be the "answered prayer" for all of us with one chronic illness or the other.

Then I read about how this diet, or that exercise may make me feel better. I am not knocking down all of those out there trying to find ways to help us, but even after 8 or more years of medications and doctors, I am not much better physically, and more certain at times not emotionally.

That be said, I will move on to the subject at hand. I feel best when "I can get in my car, pick up my Mom and leave for an overnight girl's trip". At that moment I feel so very "free" from the mundane and often "controlling" life lead when you are chronically ill. When I get an unexpected very nice comment, about something I wrote, that gives me a feeling also of that I AM accomplishing something. Much of my advocacy work has a tendency to make me feel "useful", that I have a purpose in life. I am not just out here "disabled", unable to work a job, and just "flounder" around, with no direct reason to be. So, anytime I do advocacy, activist, or volunteer work, I feel like I am on top of that "mountain" I use to describe in my own writing, and at those moments when whether it be a "blog post, or a Facebook post, or some other action such as going to an event that is about some of my advocacy work, I do get those "endorphins" moving a bit, that makes one feel as if they have truly gone that extra mile.

Both times, (especially the first time), my very first poetry book was actually published, and I pulled one out of the box and was able to hold it in my hand, was one of the very best moments in my life! It had been a dream of mine since I was about 13 years old, to be a "published author/writer". So, when I was able to pull the 2nd one together in about 5 months and it became published, again that moment of holding something "tangible" that you can see your own name on, and know that your words are now around the globe for whomever wishes to read. That times of glory I feel then, are definitely monumental.

At one time I was fortunate enough to have another author publish some of my poetry on his website. He came out with a new addition every month. So, sometimes I would send in a poem, or a piece of writing that I felt was truly something to "inspire" others. Several months down the road, I had an email from a couple who were about to be married. They wanted to know if I minded them having my poem read during their ceremony! Talk about elated! First of all, they had actually "read" my poetry, and it meant enough to them that they wanted to share it with their own family and friends during one of the most important days in your life. I was stunned, but also felt like I had truly "touched" someone. That is an awesome feeling to have for sure.

When my husband bought my set of drums and surprised me several years back with them, I was so thrilled. At that time, my chronic illnesses were not really known about and we did spend a great deal of time practicing together. Him on the guitar and me on the drums. When we would get a song written, have the music that went with it, and could put it all together to be recorded, that was always a time that I and him of course felt so very "accomplished". Of course we knew we were not "rockers", or would ever be "famous". But, the ability to take all of the steps needed and come up with a great piece of music, is like writing an incredible poem, or a prose.

My "foundation" as far as what gives me courage to get out of bed each day, is absolutely the HOPE, that I can touch someone's else life. There is no greater feeling as far as for myself, than when not only have I helped a person or persons, and made a difference in a life. So, feeling on top of the mountain, and wanting to shout out, "Here I am World" I have accomplished it"... comes from those moments that I know I have helped another or others find something to smile about, to make them feel good about, and feel that each day, giving a piece of myself, is what my life is all about.

Rhia Steele  

 

#HAWMC

#HAWMC - "A Day of Rest" Writers Challenge for Sunday 12, 2015

Good question actually! I say that because I am not sure how I honestly "recharge". In fact sometimes it feels like hours, days, weeks, months, and possibly longer before there comes a "day" or a bit of time to be able to not have either health issues, doctor appointments, medications to be filled, procedures to be done... there are sometimes what seems like weeks of constantly running around about this, that or the other when you have chronic health problems, like Lupus, RA, Sjogren's, Heart Issues an so forth. Then I deal with my husbands issues after the accident a year ago, and same thing. His are mostly related to the accident, but he still has to be seen by doctors, take certain medications, and has issues about health of his own we must battle.

I also must for the most part, take care of my Mom too. She will be 80 years old in August. That totally seems impossible. Yet, I can tell over this past 18 months, that she is much more "feeble", "forgetful", almost "frightened" over everything. For example, then I will move on, she desperately needed a new television. She was still watching an old analog TV, with one of those "converter" boxes from an outside old antenna that had been up there probably at least 50 years or more. So, when that "converter box" bit the dust so to speak two weeks ago, I explained it was a waste of money to put into a converter box, when the television could go at any moment. So, I did the research, found a HDTV that was the size she needed and a new inside digital antenna that should bring in enough channels for her. In fact she has more channels now than with the old one. I get it set up, get everything programmed in. She only now has to deal with ONE remote. And it was simple. The on/off button - red. The up/down channel buttons for stations. And the up down buttons for volume. It could not be any simpler than that. I did notice the TV seemed to be not as loud as it really needed to, so I even went and bought an inexpensive set of speakers, put those on it last week, and 'Voila the sound is great. Well, when I had asked her about the TV and the difference in the colors, and how much brighter and crisper everything was, basically I could tell she rarely turns it on. Now this is a woman that watched TV late at night, and during the day off and on a great deal. So, I could tell by her answer something was amiss. She could not "remember" how to get the channels up and down, or turn up the volume (so honestly she never even heard it at full volume), and basically I could tell she was not watching it much. This is what I am talking about. As "simplified" as I had made it. Even simpler than the other old way, with two remotes etc. She is too "scared" to touch the remote. She is too frightened to try to get the volume up and down, and said she did not "remember" how I told her to do it!? Then why had she sat there (and I had been over several times since putting the new one in). that she was not sure how to operate the remote and ask me to show her again? Those types of things are what truly add so much more "stress" to an already stress filled daily life of dealing with my own house hold, illnesses, etc.

Anyway, back to the subject at hand. I have a couple of things I do to try and "wind down", when things get too much for me. Sometimes it maybe just going in and baking a cake, or something sweet. I had mentioned I did like to bake, so that sometimes takes my mind off of all of the "gunk" in happens to fall upon my shoulders. Other times I may go outside, tend to my flowers coming up, take a walk for awhile around my long driveway. That is how I exercise during all of the pretty months of the year. I walk daily outside circling my driveway "so many times" that equal the amount of miles I want to walk daily. I may listen to my I-Pod and let "Matchbox 20" help to melt the stress away, or even as nuts as this may sound, I  "talk things out to myself", when I walk, or if I am driving around running errands. I know some probably understand and others think I am crazy. But, just being able to "voice" the stress and strain that is truly on my mind, and listen to it my own self, helps to take away that ever spinning bunch of stuff that seems to fill my mind daily. Other times it maybe "sofa" time with the pups. As I had mentioned in the post about them, a movie with each one beside me, can also let me unwind from the stress of a bad day.

Other times, I may "splurge" especially on some Sundays. We allow ourselves to run down to the "no-no" shop as I call it (the donut shop) and pick up of course all of those things we should not eat. But, sometimes once or twice a month, that bit of "extra splurge" kind of also helps to feel like you have "treated yourself."

The very MAIN thing I love to do when ALL of the "rat race" of bills, illness, medications, bills, doctors, cleaning, cooking, laundry, and more just push me to the :overload" button, then I take my Mom, and we go for either the day or usually we spend a "free" night at the Casino in OK. It is the Winstar, and once you step into the noise, the lights, no windows, no clocks, the sea of people to watch, the pick of foods... all of that suddenly takes and melts away all of the "horror" of our usual days in life. I can't think of anything as grand as getting completely away from this small town, away from the house, away from phones, mail, bills, and all the encompass having chronic illnesses and chronic pain;; as going to where none of that matters for a few hours.

It is "freedom" for me. It is "no worries" other than which "penny slot" machine I want to play next. Vacations are awesome, yet with all of the things that you need daily, it is difficult to really go on a true "vacation" without still worrying about medications and so forth. But, going for an overnight trip or just an all day, get up very early and leave on a Sunday morning. Zoom through Dallas when it is a rare occasion of no traffic, stop at our "favorite" stopping off place for a small breakfast, of all places "McDonalds", then heading up the road just another few miles to the Oklahoma State Line, and immediately seeing that huge Casino just another mile or two away. It has, and probably will always be the very best way for me to "leave it all behind" for a day or overnight, and recharge my batteries, so I can come home and feel some of that stress has been melted away. Also, the next best thing is "planning the next trip"! Usually we try and go once every couple of months. But, that depends on the weather, how we are feeling, and so on. It has been a "day off" long overdo right now. I am much MORE than needing that trip away. If our "tornado season" weather could give us a break this month, I hope to be up there "watching those reels spin" my troubles away.


Rhia Steele 04/12/2015

#HAWMC   - 

Wego Health Writer's Challenge Month

"Comfort Food?" Sweet, Salty, Tart, Citrus, Beef, Chicken, Pork.. Chinese, Tex-Mex, Hometown American, French, ORA is it another? WEGO #HAWMC

#HAWMC
WEGO Health Writer's Challenge April 10, 2015

Friday and What We like for "Comfort Food?" Do I cook, bake, and make most meals at home "from scratch?" The answer is YES! I am a home grown Texas/Czech background, and my tastes very widely. Fro, made here in our town "Klobase" (usually half pork and half venison with LOTS of black pepper) stuffed into a casing and smoked in a smoker, to Poppy Seed rolls, Kolaches (sweet pastry dough with prune, cream cheese, apricot, or other types of filling put in a little "well" in the middle of the dough. Then allowed to rise and then bake. Just to name a few down home "Czech" favorites around my home town.

I've been one that LOVES to bake sweets all my life. From fudge, to "no-bake fruitcakes". From Red Velvet Cakes, to lemon custard pie, you name it I love to bake it.

I also am quite the user of a "slow cooker" or "crock pot", depending on what name you choose to call it.

So, if I had to pick a favorite that I cook, and consider "comfort food" is a bit difficult for me. I LOVE sweets so well, and usually if I am stressed or upset, the first thing I think is, cookies, pie, cake, or just about anything sweet around.

But, my home made all from scratch slow cooker low in fat, carbs and calories has to be my favorite to cook, and what I would say is my favorite "comfort food".

My chili contains very little "beef". I know that sounds nuts, but I use "ground turkey" for a large portion of the "meat". Then I usually buy a very small portion of beef, usually something like "stew meat" or a piece of a cheaper piece of beef, because I know it will definitely tenderize by the time it is ready to eat. I also for the mot part have cut down a large amount of the "tomato" base for my chili. Both my husband and I have problems with GERD, thus one of the reasons I first of all make my own chili, and enough for several meals to freeze, plus I can keep up with the calorie count in the portions making sure I put in it, what I want to taste it like when I'm through.

I also rather than so much "meat" of any kind put LOTS of different types of beans in it. Quite often I'll have some of my pinto beans in the freezer, and I use some of them in the chili But, I also pick up about 10 cans of different types of beans to go into it. I love the very dark kidney beans, and the light ones also I also use a few cans of black beans, red beans and if I don't have any of my own cooked, then I add a couple of cans of pinto beans into the mix. It varies, but usually there are on the average of 10 cans of all different types that truly give it that thickness and hardiness that chili needs. Plus I rinse all of them off to rid a great deal of the sodium in them, plus I don't want the juices in those cans to "mix" with the taste of the chili, Then I add several different types of steak sauces into it. I try to limit myself to 1 can of either tomato paste, or better a can of roasted tomatoes in it. From the couple of steak sauces, to the tiny amount of tomato, then I put some white or yellow finely chopped onion into it, a bay leaf, a good deal of chili powder (we like a lot but it is up to your preference) as far as how much to use. What I do is start out with a bit less of all of my spices. I allow the entire thing to come to a good boil in the cooker, then add more as it cooks. There is cumin it in, a bit of paprika that is more for color than taste, LOTS of black pepper, some sea salt, but I try and stay away from as much sodium as possible without ruining the flavors of the chili. Sometimes I put some chopped garlic in it, but just a tiny amount. I don't want to overpower the other spices with too much garlic.

As it cooks, if it seems to be too thick then in small amounts I add very hot water to it, then wait and watch before I add more.

My very favorite way to eat it is usually the next day, after it has cooks for 8 t0 10 hours in the slow cooker, with corn chips, mustard and a bit of grated cheese on it. If you are not familiar with "Frito Chili Pie"... probably more of a Southern/Texan sort of dish, then you are missing out for sure.

Cooking as a whole has always been another one of the ways that I tend to get rid of my stress. Once I'm in the kitchen, then my attention is completely focused on whatever I am preparing. There are many great memories surrounding me from years past when I am baking or cooking. We always had a huge dinner at my Grandparents home all the years I was growing up. Most of the cousins were about the same age, so Christmas, Thanksgiving, Easter, and others give me that special feeling as a child of the love that was shared and prepared in that kitchen.

My Grandmother who was full Czech, took care of me the years before I went to school. So, I spent lots of time in the kitchen with her, watching, then getting old enough to help and those memories also hold a very special place in my heart. Even though she has been gone now for about 12 years, the special times in her kitchen will always remain vivid in my thoughts.


#HAWMC

Advocacy, Ambassador, Activist, Volunteer - All out of a Desire, Passion and Compassion to help others... and the heart of my own dilemma this Annual Arthritis Summit 2015

I have something to share with my dear "Online" and "Off Line" Friends. Each of you have been and continue to be a true inspiration to me. Whether it is about something I write, my books, poetry, my blog, my pursuits as a patient with several chronic illnesses and chronic pain issues, wife, now also a caretaker for Jim after the accident, that will be a year ago March 26th. It seems impossible but most of you recall I was actually at the Arthritis Foundation's Summit on Capitol Hill last year, when I got the "call" that everyone dreads... an accident, all the way back in Dallas, my husband. Basically, "ran over" by an 18--wheel tractor trailer from behind. I am STILL and always WILL BE EXTREMELY THANKFUL for the Kindness, the compassion, the friendship, and the honor that all of the ones there at the Summit, as well as those in the Foundation who helped me get aboard a plane in DC just hours later, headed back to Dallas, to Baylor Hospital. The outcome I was not sure of, and I was so very blessed by those who directly helped me that fateful day. Chris Nieto​ was and still is an angel. He helped me with everything from taking all of the information down from the Emergency Room Trauma doctors, to making sure Laura helped to get me board the plane, and he happened to have been flying back to Dallas himself, so he, Serena, and others from the Summit gave me such a "foundation" to stand upon, as my entire world literally crashed down around me. I look back, and I crumbled to the floor as my daughter told me about the wreck, and Chris began to read off the "numerous" injuries Jim sustained. From almost EVERY RIB broken, to his back basically "broken in two" - - from C-7 through T-7 back surgery done within hours of the accident. A concussion, fracture of the shoulder, possibly a leg, a "nick" in the aorta, and the list just read on and on.... Anyway, all of 2014, we spent either with him in the hospital and the rehab hospital over 3 months. Then several more months of going back and forth several times weekly for rehab... and just a score of doctors visits... plus of course all of the "red tape" that yet has not been settled...

So, moving forward... I was HONORED to be given such an incredible title in my advocacy work, as "Platinum Ambassador" for the Arthritis Foundation. I spent time when I was not either ill myself, or having all of my teeth pulled, and replaced, or any number of other things, to be able to attend the "conference" meetings, make some relationships with some of our Congress People, and do all I could with a true passion to HELP ALL of those out there like myself, suffering from these dreadful diseases....

After my DC visit in 2014, I was so totally elated and felt so privileged to perform one of my "long time" dreams, and that is to "stand on the White house steps" and TELL MY STORY! Well, that dream came true last year in March, 2014. My plans were also to BE BACK  this year in just two weeks, and again be able to STAND with such an INCREDIBLE Foundation as the Arthritis Foundation, and be a part of their wonderful advocates!. When I found out at the very end of 2014 in December or so, that I WOULD BE ABLE TO GO back to DC I was on "cloud ninety nine"!  Of course, my health has waxed and waned, I still have yet to COMPLETE my entire ordeal of these "mini dental pins" in my bottom dentures... due to all kinds of complications, including an "oral-maxillary communication" in other words a "hole" between my mouth and my sinus cavity... and infections etc... yet, I had bought new boots, had all of my clothes lined up, my "ducks in a row" all ready to go back to DC in two weeks!!!

Well, these illnesses "don't care"... they don't care if YOU have PLANS... they don't care if you have to "miss" something you so want to do, they don't care what else is going on in your life...  if "they" decide you will be sick, then sick it is... YES, you can try and push through it, you can try to ignore a flare, or not deal with medications, or not rest, and just do as you wish. But, when it is time for a chronic illness/pain issue arises, it WILL put you DOWN... and you have no choice... you cancel parties, plans, dinners, you don't celebrate holidays when you should, or you miss birthday plans... as we speak of often in the "spoon theory"... you have so many, and you can "borrow" a few... but when there are none, there are none.... thus... due to my own personal bout with several health issues due to the RA, Lupus, Sjogren's, and so forth, my "health" has been not so great, and I've been trying my best to "ignore" the ugly truth... but much to my disappointment... I am still not well, I probably am going to go through some major medication changes, now I am FINALLY going to have the bottom dentures pinned... after all these months of waiting... and not being able to eat much, or if I talk much, the bottom ones slip and slide around thus, I have heck even keeping the top ones from slipping also... my pain level has jumped through the roof. We are not sure if it is lower back disc compression fractures due to the osteoporosis, the RA and my hips, other leg, nerve issues, or what... plus I have just all of a sudden soared in having several Lupus Migraines... they have gotten so bad... and with Jim not able to drive, and his own medical issues with the  Paraplegia causing bad balance problems, where he can't bend forward, or he would fall, he can't go down stairs without help, there are just many things we take for granted daily, that after something like his accident, are things that are just not possible, no matter how small they may seem. He is not able to get things if they are pushed back far into the Fridge, or in a cabinet. He can't climb up to get things out of our very top cabinets... and so that makes it also very difficult for me to be gone for several days... we thought we had that all taken care of, and that person now is having some other family medical issues, thus I don't have them to come and help him out while I am gone, as we thought. So, between all of the "little things", the big "elephant" in the room of course is... I with very deep sorrow and disappointment, must bow down and not go physically to the Arthritis Summit this year. It took me over a week of crying, kicking myself, feeling guilty, being mad, sad, and all of the other billion emotions wrapped around this for me to just have to admit that I am just not physically able, and with family things also, to go this year. I will of course be ON BOARD 500% as and "E-Summit" Attendee... and PLEASE ALL OF YOU take a moment, and go to the link I have provided several times and send in your letter. They WILL BE HAND DELIVERED to YOUR Representative. So, it is vital you get to say your own personal things about these dreadful and unacceptable diseases. I hope to be able to "pinch" myself, and wake up from this nightmare... but no - not a nightmare... it is just the truth and I had to face it... one thing I have "gleaned" (honestly many) but one thing that I have learned about my personal advocacy, activist, volunteer and ambassador work, is that it comes from A VERY DEEP PASSION AND DRIVE and it just as important if not MORE IMPORTANT than a "regular job" People that do this type of thing do it from their hearts, minds and spirits.... we "live" to help others... no "glory"... no "personal gain" honestly... but out of the sheer passion of knowing WE HELPED - WE GAVE VOICE to a patient, or patients... that is WHY MOST of us do this... out of the desire, love and compassion to help others feel better, and live a better quality of life....

Rhia

Please see this URL to SEND IN YOUR LETTERS!!!

http://www.arthritis.org/advocate/advocacy-summit/virtual-summit/letters.php?utm_source=LetterWriter&utm_medium=email&utm_term=Advocacy&utm_content=body&utm_campaign=031115

 

Chronic Pain, Illness, Medicare, Disability, Medicare Advantage Plans and the Government Telling Our doctors how to treat us as Patients! WE MUST stand up and make things CHANGE!!!

I didn't get to mention this yesterday due to all of the "drama" surrounding my pain pump ordeal, so I will mention it today. While my pain doctor was working to refill my pump, we began discussing Medicare, medications, insurance, etc. Come to find out there were some people that switched over to a different Medicare Advantage Plan offered by United Healthcare, which AARP endorses. Well, I did my homework for months before switching. I had the Humana Medicare Advantage Plan for several years, well in fact ever since I was put on Medicare. Here in Texas, someone who is put on Medicare "disability" before the age for retirement, has an extremely difficult time getting a regular "supplement" to Medicare. About the only way you can get your "Part B" and drugs covered is by taking a "Medicare Advantage Plan".... so that means you "give up" your regular Medicare benefits, and you take one of these... there are not that many, Humana and United Healthcare are the two main ones. So, that means your choices are very narrow. I worked for months checking out the United Healthcare plan before I switched on January 1st. I got online, added all of my doctors, added all of my medications... to see if they were covered. I also called United and spoke to a gentleman there, that stayed on the phone with me about an hour. We again, went through my doctors that I presently see, through all of my medications, including the Orencia. At the time last year, Humana did NOT cover Orencia. So, I had to get it through the pharmaceutical company, which we know is time consuming and full of red tape paperwork, for the patient and the doctors. I had finally gotten on it, but then at the first of the year, they wanted to redo all the paperwork. Well, after I jumped through hoops for weeks, calling them, finding out what they needed, faxing paperwork to my doctors office, faxing paperwork to the Pharmaceutical company, I come to find out that United Healthcare DOES COVER the Orencia. So, then I had to get the "prior authorization" again from the doctor, but after about 4 weeks of being without my medication, it was finally approved and in fact they sent me 3 months of Orencia. So, I don't have to jump through hoops, and should be good until next year as far as that goes. BUT, now we have an issue, that it seems the Orencia is not working. In fact Rheumatologist called me a week or so ago, and I had told him in an email that I was not better, so he doubled my Prednisone to 10 mg daily, which I really hated to do, but it sounded like it maybe a way to see if that would help the inflammation. Anyway, onto the subject at hand. As my doctor was refilling my pump, he asked me about my United Healthcare Plan. I told him it was one that that had told me they would take, so it was the one I chose. I was very worried about them paying for the pump refill. but, I guess it got approved. BUT, HE told me, that some of his patients that took out a "Unitedhealthcare" Medicare Advantage Plan policy, got a "new card" at the first of February, and that their pump refills among other things were NOT COVERED!!! He said about 20% of the patients on these plans somehow got screwed over, and now they can't get their pumps refilled by him!!!! So, when I told him about going to the Summit in March at the end of the month, he told me to tell it like it is, and tell them how badly they are ruining things for patients, doctors, and putting patients lives in the throws of jeopardy. It seems somehow they automatically "switched" some patients from the plan they thought they got, and then got new cards, and it was NOT the plan they thought they were getting!!! This absolutely has to do with Medicare, the Government, and also not just Federal Government but our State governments also. I should be able to get a "Medicare Supplement" just like anyone on Medicare, but here in TX, they "make you" almost take the Advantage Plan instead. Even though there are about 8 or 9 different types of supplement plans, all in letters like Plans, F, G, O, etc... and they are some more expensive because they cover more and some don't cover as much, so those plans are cheaper. None of them are "cheap" but then you are not dealing with many doctors who are refusing to take these (MAP) due to them not getting paid!!! He told me before there were a couple of patients he did very expensive surgeries on, like an implanted pump, and it took him over 2 years to get paid and then he had to go in front of a judge to get them to pay the bills. No doctors can continue to see patients and keep afloat financially if they are having to wait, 3, 6, 9 months or more to get paid for services!!!! It is crazy! So, he looked at my Insurance Card, and said I was okay. But, he said again almost 20% of the patients he sees are on these plans, and this one in particular they won't pay for the pump refills. Also, I asked well can't they just pay cash and have you refill them! He said as far as he knew and he does NOT know why, but NO, if those types of plans do NOT cover something, a patient cannot "pay" out of pocket to have it done!!! NOW HOW STUPID IS THAT???? What difference does it make, if the insurance won't pay, then they patient should be allowed to pay for it!!!! Things are going to get much worse before they get better. I fear I maybe facing either hip surgery(ies) or finding out I have compressed discs in my back from the osteoporosis or something is going on. My pain levels have just shot up immensely, and it seems we cannot get it back under control for some reason. Something is causing my problems, and I am sure it means X-Rays and CT Scans to try and see if something is going on... I cannot have an MRI at all, so that makes it a bit harder. Anyway, he always keeps up with what is going on especially with Medicare, the Advantage Plans and the government..... many doctors don't really keep up so they have no clue what goes on with patients and trying to get things covered!!!

I am totally fed up with it all. It seems every day I battle with these ridiculous headaches. There for a good while, I went for months and months and the only "headache" I would have is a Lupus Migraine, as I called it. I could go in and see my PCP (and in fact I see him tomorrow) have an injection of a corticosteroid and within about 24 to 36 hours the headache would be gone. I've had almost a none stop headache now for at least 3 weeks. As long as I don't move around a great deal, and are not up doing things, it settles down. Yet, as soon as I am up and moving around, or even setting here trying to type my head is just pounding. I've yet to understand why the very sudden change in the headaches honestly. I've tried to research it out, and of course since I've had migraines off and on all my life, there maybe times I go through this process of having them and the they go away for awhile. 

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/

Finding a starting point or possibly a stopping point... OR maybe there is no point at all... All in a day of Autoimmune Illness

I've been able to allow words to just pour out of my soul on Facebook, and here in the past week or so. Yet, when I put myself back in "alignment" to begin working on my book, again I lose all of the hope I've had to begin...

It is not that I haven't began... Gosh I've probably written enough for 2 or 3 books. Between here, Facebook, and other places I post in detail all types of my own personal experiences with these hideous illnesses and maladies, to the some times irreparable dealings of some medications, and the problems they can cause... and moreover what is so very frightening I have came to the conclusion that there is something else physically going on with me, that the doctors, tests, lab work, and so forth have not been able to pinpoint yet.

As I've said now for awhile, either there is much more to my health issues that need to be looked at. I realize that many of the symptoms of any of the autoimmune illnesses can really be "overlapping" in nature. It is a defining moment in any life when a physician can give you a "real name" for a certain symptom, or chronic illness. At times the answers are truly vague at best... and the chances of getting a proper diagnosis at the very first trip you make.

So, now the question is, how do I go about trying to find if there is something else wrong, if so what doctor do I consult, and what will happen if there is another AI involved, like MS, MG (myasthenia gravis), and so on? More than likely, unless it is MS, they have came up with some great meds for it, BUT some of them are already things I am taking, or they are so new and so expensive, my insurance would probably turn the noses up and drowned in the rain, if I was prescribed one. You can believe, if it can happen, or will happen, or has happened ... then it has been with me.

I am seriously debating where I go this year on my blog... and if I want to continue to grow my audience then it is imperative that I work it and work well. I don't want to lose who I have and of course I want those that are already coming here to be excited about the new year and what I am going to say... and how I am going to say it.....

So, bear with me, as I take my own heart felt words, and pour them out in different ways. I am trying to experiment on my blog, so I can have a better understanding of writing my 3rd book.

More often that not, (and I just had an idea today, that I think I am actually very seriously considering) it is bad enough for the "same of stuff, day after day, to step into your path of consciousness. Those types of things tend to cause a huge road block  for those of us who already suffer from massive brain fogs at times anyway. Then to try and work around all of it, and have something come out that maybe worth another persons time to read is a monumental task.... so right now, I only know to crawl up the side of this mountain and begin the book.                                                               

Christmas Eve 2014...

Well, I am not sure what to say honestly when it comes to the reflection back on 2014, how I feel about the holiday season, and just how quickly it has seemed to "pounce" upon us.

From my "up" moments of being in Washington D.C. in March this year, to the tragic call from my daughter on the 26th of March telling me my husband had been in a very bad car accident with an 18 wheel tractor trailer on his way to the Airport in Dallas to fly out and be with myself and his Mom...

From there, this year has been filled with so many up's and down's.. either I am not well and are having flares, or the entire ordeal with my teeth and the Sjogren's, it seems we just never had a "break" of good luck any where we turned.

Of course I cannot say that entirely, because we are blessed that Jim survived the accident, and even though he is considered "paraplegic" he can walk with a cane. He still has many issues, including balance issues, but still he for the most part can get around with a cane, unless it is somewhere big or if we are going to do something in Wally World, which is a huge building to try and walk through with a cane.

But, between his plight and issues from the wreck, and then the Sjogren's literally eating my teeth away from the inside out... and the "forces" that are waxing and waning back and forth over the settlement of the accident, of course our finances are also worse than tight for sure.

We have been able to scrape by, but with some issues he had with a change in some main lines where the "servers" are that "host" the clients websites he has, we may have lost at least 2 clients, which were the two that usually were continually wanting updates and so on, thus those were the two that brought in a bit of a salary, although small, but yet better than nothing for sure. Now we are looking at the fact if we lose them, we really will be in a bind financially. They took away the medical benefits Jim was getting while he was in the hospital. Get this, they took MY OWN disability and counted it towards "income" for him... and then when we are probably 300 percent under the poverty line, they said my check was like 12.00 a MONTH over the limit thus they dropped his medical coverage. So now he also has no medical coverage at all. That means any doctor he sees has to come out of our pockets, and they are getting more empty by the day...

I also realize we certainly are not the only people in TX or in the nation that are fighting back hard times as far as finances. Many have been out of work so long, or have had to go through what savings they may have had to just live. So, I am not complaining for just my family, but for the many others out there with either the same or worse circumstances.

My "hopes" are for the coming 2015, to be even a better advocate, and good more activist and ambassador work through the charities and non-profits that I truly believe in. I know for many people, now days it is difficult to know where you might like to donate, and wonder if your money truly goes for the purpose intended.

My Mom is a very good example of someone that is not sure where to donate to. It gets to the point that she gets phone calls every day almost from one or more places asking for donations for "this, that or the other". With things in the world as they are now, even though we hate to think so, there are people out there, who take advantage of either elderly folks that may not understand what they are asking about, or they do give and then have their identity stolen, and so forth. I have had to warn my Mom time and time again to NOT give to anyone that is soliciting over the phone or knocking on her door. We even have a sign up on her door, plus I have put one on mine also that says NO soliciting, and that means don't ask about "lowering" utilities, or getting donations, or "insuring your water pipes" (now that is one I cannot fathom anyone falling for), but constantly somehow they have her name down and probably know she is up older and think that the can finagling her into giving out information that they can use for their own gain.

----------   ******** Beyond Christmas Eve*********-------------

Try December 30th 2014 - and beyond....

I figure if I want to get much more in BEFORE 2015 Rings in, I had better get these fingers to moving a bit faster. Probably more like pull my head out of my butt, and out of the 29,000 other places it is, and try to put down something that may make some sense out of my own life, and possibly others...

Not one of us is a "mind-reader", a "fortune teller", a "profit" (or I guess I am not sure about that one, I feel the Lord could actually send a profit down anytime he wanted to)... but when I talk about the word "profit" I am more meaning someone who tries to deliberately con someone out of money telling them they can "read their tea leaves" or follow the life lines on their hands... or read the Taro cards... and it is NOT that I don't believe that things such as that or people such as that can exist, it is more that I feel there are not near as many of these types of "world palm readers or fortune tellers" than they try and allow themselves to be. Each of us have our own unique ability to "feel" when something is right or wrong I think. Whether you truly tap into that ability is where the hairs split, as the saying goes. You can take that pathway and follow your gut and heart, and learn a whole lot about yourself and your fellow man and woman. Or you can choose to put on blinders, have tunnel vision, and only see what is directly in front of you. To me, that is not really a great way to live. Of course it is a frightening thing to "feel" something, or to "think" something about your life, or a loved ones life. But, it does not always have to be in the "blackest of black ink darkness".

You may find yourself, if you open up thinking about the "awesome" happenings in life... yours, family's, friends... or even strangers on the street. My family on my Mom's side have that type of "uncanny" ability to feel almost too much at times. My Mother really has it, yet she does not open up a great deal and talk about it. Yet, there are times something really strikes her in a dream, or as a feeling, and she does what I do, calls and checks on whomever it is she is overwhelmed with in the dream.

I've ran into more of a "night terror" wall, when it comes to if I wanted to call it a "dream world". I began trying to research the issue as to why almost every night of my life, I have a propensity to have not just night mares, but more what I call night terrors. Many nights, I wake my own self up. Either the night terror carries me to a place that I feel I am suffocating, or I am being "flogged" not exactly by a "strap" but more of a flog with words. It usually has to do with people in my past. Either people I went to school with, or have known from various jobs in my life. When I first finally got completely out of the abusive in every sense of the term, relationship with the "2nd" jackass I had been married to for far too long, I had them nightly. I almost could not lay my head on a pillow and try and sleep. For I knew in my dreams he would come after me in one way or the other. Usually through a window, with a knife, sometimes trying to run me over (which he did try in reality a couple of times)... just horrid night terrors that I thought would never go away.

When I decided while I still lived in Seattle, to venture out on my own, have my own apartment, take care of myself only... I thought the nights would be worse with terror. Yet, it seemed that I overcame them for the most part. There was something about living completely alone, and taking care of just me... that settled my unsettled soul. I could sleep like a baby, but just had hell working due to all of my health problems. Thus, as the health problems grew worse, even then the night terrors seemed to have died down a great deal.

As the tides of my life once again changed, moving fore and aft, to the South, then the North, from the East to the West... it seems my life has always been one that I must "Roll with the Changes"... Maybe that is one of the reasons I love that song so much... because all my life I've lived through a dichotomy ... where one part of me, seems to move one way, yet a portion of my life tends to be in another dimension. That may sound all too profound to even comprehend, but I've been called both a dichotomy and a conundrum .... which I used to really be pissed about. I took both as a huge insult, thinking that people saw me as some kind of "nut" who could not get their life straight enough to stick to the program I guess you could say.

I was very wrong in that thought. As the years have went by, I am truly both of those words and so much more. I can parallel a shooting star and head in a very straight and narrow path, or at times, I can be in all different paths, much like a comet's tail that tends to "flare" off in different directions, yet all at once. That portion of me reminds me of a huge firework exhibition, where some of them go straight up into the heavens, and then come down in a fountain of color. Sometimes red, green, pink, blue, purple... every color in the rainbow...

Now why my brain takes me off on several courses when I write, I guess is only something another writer, author, will understand. Many of us multitask in our daily lives. We deal with jobs, bills, kids, hobbies, houses, and so forth. Often juggling several different items at once during our daily jaunt through out what we call life. Yet, for a writer, it is sometimes what is "multitasking" in our brains. For myself, I may write a line or two, when something else hits me, just due to what I had put down the sentence before, thus I am off on another pathway through the minds of what many deem as insanity. Maybe to be a true writer, you must deal with the insanity before you can sanely write.

As I think about and write about the things I want to have in my next published book, I find myself getting lost in the circle of the ring of infinity. Where one thing may end, yet another begins at that particular jumping off spot. Such as I maybe penning something down about a particular autoimmune disease or symptom, yet that takes a turn, and around the next bend could be something "related" but sounds completely different than a "stuffy old autobiographical" book that has already been written, just out of a different mind set than another illness/author may write it. That does not mean that ANY book, about how one lives through these chronic illnesses that have captured our lives, bound us down inside of our homes, minds, and it seems the only contact we have with the real world maybe social media.

When I was listening to Laura Hilldebrand speak about her biography she wrote, about someone else and she also took me to a place in writing that I never quite thought about before. No matter if we are writing fiction, a novel, a movie script, music, or a biography, a "piece" of you flows through those words. You find a common ground between who or what you are writing about, and lace it between the person you are, and the outcome is a pure mixture of both... your view point about someone else, yet through the eyes of someone who has also gone through the hills, valleys, the darkness and light, the favorite inter-sanctioned places that whom you are writing about has been. You relate, you can empathize, your individual yet, duo of souls can dance together, in a seamless binding of what pain, power, gain, richness, poorness, and all that have motivated one soul to do well to another. If in your own heart you know "It is well with my Soul"... a Baptist hymn from a long time back, then you have meshed all of your own feelings, with someone else.

This may also mean about the way you write your own "auto-biography". As you pen those words, the ones that tug at your readers heart strings, gives them the emotions, the good, the bad, the unthinkable, the peaceful... all you have wrapped up in that book binding it is a gift that shall mean a hundred different things to a hundred different people that reads it.

I ran into a really "terrible" but in all honestly excellent way to explain what I mean. I made a post on social media, Facebook. My intentions were to absolutely honor the person that I was speaking of... for he had passed away extremely suddenly and was one of "us"... with Lupus, with RA, Sjogren's and he suffered from several vital organs that were all involved with the illnesses. So, I was posting something from one of the organizations that I am an Ambassador for (Platinum Ambassador now)... a portion of a newsletter that was sent to me, from the Foundation to pass on freely to social media, friends, emails, wherever I might like and to whom I might want to pass onto... I had just "pulled" the entire "newsletter" from my email and made it a graphic basically. There were no "clickable" links posted with it. Of course the Foundations name etc was on it... a portion of the article was commending not just myself but all of the North Central Texas Regions advocates, activists, Ambassadors etc. for getting several more of our Congress people on board. We felt this was an incredible feat since we had mid-term elections that "hit" us in losing several that were on our "Arthritis Caucus"... and were "helping to advocate" for us from the Federal Congress. Well, when I "cut it out" and copied it into a .jpeg it never dawned on me that on the very bottom of the newsletter it had a "donate now" button on it. I really did not pay it much mind or give thought that someone would misinterpret what I was trying to say.

I had been trying to say that our "fallen Advocate" would want us to push forward, to be proud of what we were and will accomplish. He would not have wanted us to wail and loose site of what our "jobs" were all about... which was advocating to win the fight against Autoimmune and Autoimmune Arthritic Illnesses. Thus to me, posting that newsletter, that actually came out the same day he passed away to me was "honoring" what his wishes would have been. Well, most of his "advocate" and volunteer work was done with one non-profit, charity. So, someone got the "impression" even though I carefully worded it that I DID NOT MEAN monetarily, but more in our advocacy work he would be sad if we didn't show what strides we made... thus having 5 new Congress People on board for him would have been as his saying "Onward and Upward"... but of course SOME PEOPLE have to READ things into what was posted and think that I meant for people to "give" donations in "His name" to this particular Foundation. Which happened to be the one he did most of his volunteer work for. Which that NEVER even entered my head... I meant in "heart and soul" type of work not anything that had to do with making a "donation" in his memory anywhere, unless that is something personally people want to do... then that is between them and their own hearts... not for myself nor ANYONE to decide. Well, it got back to me very quickly, of course.

And I "flew off the handle"... it hurt me so deeply that here I was trying to put something up "good" that this gentleman would have himself been so proud of in his memory, but just because I did not think to cut off the bottom that said "Donate Now"... and as I said it was NOT any type of link to click at all to donate a thing... but others got their panty hose in the crack about something that was supposed to be uplifting, kind and from the heart. NOT EVERYTHING in life has to be ABOUT CASH!!!! I think it hurt me that anyone would feel the "need" to ask me, much less even think that is what I meant. IF they would have READ MY POST, that went along with that graphic, they would have IMMEDIATELY known I was NOT ASKING FOR DONATIONS IN THIS MAN'S NAME!!! For no one... no charity, no non-profit, no where, no how, but someone had to "go there"...

Then once all was "explained" and said, done and as far as I was concerned over with... to CLARIFY things and not have any more WONDERING... I took down the graphic, left up the post with an explanation as to why the graphic was NOW by itself and took the "Donate now" off of it!!! Someone asked me why I "bowed down" to that crap....

It is not that I "bowed down" at all. What I did was STOP the stupid rumors coming from those mouths that did NOT have the courage to ask me. They went behind my back, told someone else, and then they had to come and ask me... Which was total nonsense. As I also put in the post, if for any reason, anyone has an issue with myself, my posts, or what my intentions are, ASK ME!! Don't beat around the bush, walk around the mountain, and get someone else involved in it. I could have answered the question and all would have been done... Now I am still somewhat perturbed... and I notice not many have said much on my Facebook page after that... well it could be the "holidays" and people are out and about .... busy... thus are not posting as much. But, I feel someone got the butt up over the dash board for nothing... and now they are trying to back track out of it.

Okay--------- to be continued

A Bit "Bass Ackwards" - Going to be a post from about a week ago... Topics for Blogging in November - Feel Welcome to Join in...

I had mentioned in a post about a week ago that last year in November one of our Health sites had put on a "30 days in November - 30 different posts each day event". I had actually thought it was for this coming November, then found out it was actually last year they did it rather than this year of which they done in 2013. So, I decided it would be a good way for me to find some "subjects" to post on that maybe a bit different, as well as getting all of you to jump in and join me. I said I would post some "subjects" for the days of the week, to get us started, and then please if you have any subject that has something to do with illness, medications, doctors, diseases, anything medical feel free to tell us your opinions.

So, I am going to kind of post the subjects that were from the last years November posts, so I can get us started with a few ideas.

Here We Go:

November 1st - IF you use "smart phones" or an I-Pad, I-Pod etc and are into "Apps" what is your favorite medical app? Do you keep up with your exercising, or calories, or do you use some type of to keep up with any type of health problem you have? If so give us the name of them, along with the reasons why you like those particular apps. If you don't use an application, then name a online site or sites you may use to keep up with information on health.

November 2nd - How about a "List" of things you "Know" you can do...

and others you "think you may do in the future"...

i.e. (I KNOW "I can tell my own personal health story to others")

vs. (I "think" I can cook, clean, go to the market, and wash the car all in the same day") - kind of a "realistic" look at what you CAN do in your daily life, vs. your sometimes a bit "unrealistic" view of what you WISHED you could do or still do in your daily life"

November 3rd - Do you have a "Mascot"? In other words, my "Mascot" is a hummingbird. Why a hummingbird? Because they can go any and everywhere fast as they can fly, they are able to bring beauty to our scenery. They don't harm a thing, and the bring joy all around when they appear around me feed out of the feeders I have up for them. So, do you have a "mascot" or something that represents beauty, strength, tenacity, wellness, and wholeness. Or possibly is there someone or some thing you might like to be, or something you maybe able to do, such as float like a butterfly, or someone you might like to be...

November 4th - How do you Feel about "alternative medicines" and do you use them?


November 5th - What are 5 things you can do that you thought once you were chronically ill you would not be able to do once you were diagnosed with a chronic illness/illnesses?


November 6th - Name 4 things that you are NOT ABLE to do anymore since you have became ill, that you truly miss being able to.


November 7th - Do YOU take YOUR MEDS as you should daily? Or do you take them on a "hit or miss" situation?


November 8th - Do you feel your medications are working to help you? If so how do they make a difference? If you feel they are not making you better, have you spoken with your doctor to try and change things around or do something different?


November 9th - How do you handle those that don't "get" what "invisible illness" means when you run into them? I am sure that most everyone of us have ran into those who "don't" truly understand or may not even "believe" we are chronically ill. Do you have your own  condensed "story" that you tell them, or do you just ignore them, put it off as "ignorance" and leave? Or do you some days feel like just "going off" on them and reading them the "riot act" when it comes to their own "stupidity" about chronic pain, chronic illness and how they treat you? I feel I've been through ALL. There are "days" I totally have the patience to "explain" a bit, and then there are times, I just want to YELL at them?

November 10th - Throughout your road of illnesses, diagnosis, medications, doctors, pharmacists, what was the most impressive turning point or inspirational moments in those times...how long have you been chronically ill?


So, those are a few to get you and I started. If you have ideas you might like to see discussed feel free to put them here under comments so we can see them. I will "answer" more of these myself also.....

Invisible Disabilities Week!!!

http://invisibledisabilitiesweek.org/

Just because You CANNOT SEE IT - Does NOT mean that the pain and disabilities are not there!!!

More Incredible News on the Homefront of the Fight Against Lupus

http://uthscsa.edu/hscnews/singleformat2.asp?newID=4908

$1.12 million to fine-tune the body’s “Homeland Security”

Posted on Wednesday, October 08, 2014
Contact: Elizabeth Allen, CTRC, 210-450-2020; allenea@uthscsa.edu

Physician searches for better lupus therapy and clues to ovarian cancer treatment at the same time....

Talk About News to Make You Shout! You must read this and be sure to go to all of the links!!!!

I was so blown over by this announcement from the Lupus Research Foundation I had to rub my eyes, blink and look again to make sure I saw what I saw Correctly!!! This is such phenomenal news I was just taken aback.

And further not only do we owe the NIH hats off to this incredible research opportunity, but everyone below along with all of the researchers individually, those folks that are on board for activism, Ambassadorship, Volunteers... everyone who tries their very best to stand up and say that what we have now as far as help for these illnesses are simply NOT acceptable, as the Arthritis Foundation puts it. Hats off to all that have been and will go back to the "Hill" in D.C. to open up and tell their stories, or the stories of those loved ones hit by the horrific illnesses. People like myself that try their best to live a "normal" life when there is never any sense of "normal" when you have a chronic illness/pain and especially when it comes to an autoimmune type of illness. I am so thrilled to put this on my blog and share it with my readers!!!! Be sure you go to ALL of the links and see what is being said about this incredible Undertaking... the FIRST EVER of ITS KIND to do something to stomp Lupus and RA, along with many other AI Illnesses into the ground.... Again I am just totally almost speechless.

AMP Rheumatoid Arthritis and Lupus:

The partners

http://www.arthritis.org/

Government

• NIH

Industry

• AbbVie
• Bristol-Myers Squibb
• Merck
• Pfizer
• Sanofi
• Takeda

Non-Profit Organizations

• Arthritis Foundation
• Foundation for the NIH
• Lupus Foundation of America
• Lupus Research Institute/Alliance for Lupus Research
• Rheumatology Research Foundation

http://www.niams.nih.gov/News_and_Events/Press_Releases/2014/9_24.asp

 

 

 

http://www.rheumatology.org/ 

 

 

I will be posting more about this tomorrow and also more "Kudo's" to everyone participating om this historic event for RA and Lupus!!!

Post of the "The Face of Pain" - FOR NATIONAL PAIN AWARENESS MONTH!

When I see thee numbers is just astounds me. It is just like the autoimmune illnesses that for many destroy our lives. The chronic pain and the AI's tend to run hand in hand. Most with an AI, do also have chronic pain. So, pain is always there somewhere, lying wait for another victim. Please help and do something to change the "Face of Pain".....

Arthritis Foundatiion Jingle Bell Run in TX and Many Surrounding Communities In December!!!

The one closest to me is in Ft. Worth! I would love to see one of the girls I made friends with in DC while I was there in March!!!! Here is the URL and all of the information.... Please come and join or give your donations....:)

Ft. Worth's appears to be on December 6th

http://fortworthjinglebellrun.kintera.org/faf/home/default.asp?ievent=1112128

 

http://www.arthritis.org/programs-events/jingle-bell-run/

WEGO Monthly Book Giveaway! I was one of the winners!!!

http://blog.wegohealth.com/2014/08/26/winners-of-questioning-protocol-book-giveaway/

Please take a look! I was one of the lucky winners this month in WEGO's Question/Answer Book Give Away!

I am totally thrilled!

Can't wait to get it!

Rhia

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....

3rd Time A Charm!! -

 It is still not exactly as I want it BUT you can now "comment" right from the front page, where it is "no comments" just click there and a new window where you can comment will open up. Comment there and any other comments will also be in that window. I may still go back to having them right under the post. I feel people are more inclined to "leave a comment", and read any that are there.

 

I am hoping this does help clear some of the mess up. Google really did a number on Blogger when they made the "Circles" and the Google plus 1, etc. Not that they are a bad thing, but it did for some of us cause a nightmare with our blogs. 

I am also seeing a "drop" in people coming in. I realize that is my own fault, with everyone as crazy as it had been. For about 6 weeks, about 4 days of each one has been spent either at therapy, at a doctors office, at the dentist, or something to do with one of us and medical mess. I am hoping that is beginning to calm down a bit. Jim "completes" out of the home therapy tomorrow... so that takes care of 2 trips each week to Waxahachie. It seems like not that much, but it just wrecks the afternoon and evening. By the time you get out, get out of the traffic and get home to straighten out dogs, house, and put things away, it is a hurried dinner of whatever and then all we want to do is sit down and freaking relax. I see my Rheumy next week! Thank Goodness... and I will post at the bottom of this a link to my FB page where I put one pic up of my new beautiful teeth! ;) I will get some when I am dressed and have makeup on next week. But for now my mouth is still swollen, so my face in places is a bit puffy especially my top lip and around my nose.... More very SOON, I promise... I have LOTS of exciting new stuff... some I can tell... others, well it will be awhile, but I still have eons of stuff to catch you up on.... Hugs, Rhia



I FINALLY figured out what the issue was on the "comments" part of my blog. That is where you can put your comments right under my posts. It is ready to go now :) Let me know if you have any problems!


Rhia

I am still having problems on the "main page", but if you go to the "page" of that particular post, then you will see where you can "comment"/. click that and a window will pop open where you can post comments. I know blogger is making a bunch of changes, which has screwed up a lot of what I thought was working. That is why I have thought about going to Word Press. But, then that means a learning curve to figure out Word Press also.... always something...  If this is still not making sense, send me an email at rhia@ravishingrhia.com or redstangblonde@yahoo.com and I will explain fuller.... I want you all to be able to comment! That is my reason for this in part, is so I can HEAR FROM all of YOU!

... More on the "State" of Medical Care in Our "State" (s)...

... cont from post on FB...  

...is honestly someone I would be frightened frankly to see or to take anyone to that did not know much about medication and the medical field themselves. The woman is pure dangerous. She is just a bomb waiting to go off. I realize that trying to find reputable physicians that want to take Medicaid in ANY state is not easy. When I was in Seattle, I had went into to try and find an orthopedic doctor to help me with the same shoulder that NOW is completely replaced. They at that time were a bit different about Medicaid in WA state. I had no trouble at all, getting on it... but once on... no problems getting meds... and so happened the PCP that Jim had been seeing took the State Medicaid there so, that part was great. But, when it came to finding ANY type of specialist, that was insane. Just like here, either there is none OR if they have one they "no longer" take Medicaid, or not the "program" one you picked (it works much like a Medicare Advantage Plan does I come to find out) where like myself I can choose to have plain Medicare and find a "supplement" to help with co-pays etc... and the 20% I will owe. OR you can pick a "Medicare Advantage Plan as I did" and any of the doctors that take it, I pay 40.00 for a specialist, they see me, and anything they do "in their office" Humana pays for and my part is the $40.00 or $15.900 for your PCP. But, just as now this M'caid "Advantage plan" the idiots put Jim on, most doctors are either in the Dallas area OR up way past Dallas towards Plano, past Garland Or almost all the way to the OK/TX border! What happened rather than like the woman that helped me in Seattle find the "program" that fit my location better, the caseworker brought the paperwork into Jim, did not even tell him about the differences, asked him to pick a plan and sign. She never told him a thing about the differences, thus because he was at that time still ill enough he was unable to really "know AND READ" what all it said... he gets put on this one "Advantage" plan as I like to call it, that does not really cover much of our area or any around us! She rushed him, would not let him keep the paperwork till I could get there and help figure it out... thus he got the shaft so to put it, when it comes to these "specialists" he needs to see for future care such as a Neurologist, a Cardiologist, a GI doctor, an Eye Specialist... for some reason the eye doctor there that examined his eyes and did a new script, said it seemed something indicated to him, that Jim should be checked for Glaucoma... now he has been before... but this could be the results of the accident... because as we are coming very quickly to find out this "Spinal Cord Injury" can have an effect on just about EVERY PART OF THE BODY! One way or the other it effects just about everything. Heart, Lungs, Brain, Liver, GI Tract, Legs Arms, the entire "autonomic" and parasympathetic nervous system... which is also then divided into several other "branches". But I am speaking more of the fact that some of our nervous system makes things such as our lungs, heart, liver and so on work... then the autonomic is of us making our legs, arms, head and so on ... So there are MANY thing medically he might face, (not unlike us with our own Chronic Illnesses and Pain do) in the future. So, (Much like us( we have to try our best to be "prepared" by having a certain number of specialists already that we are established with, just in case one of these issues come up. Eyes is a huge one for us. I am on Plaquenil, which can cause macular degeneration and basically if not c found in time can cause blindness. Thus I have to see my Eye specialist every year for a couple of special tests to make sure I do not have any of that coming on... so trying to find all of these "specialists" that WILL take this type of "Medical Insurance" along with see him as a new patient, is as mind boggling as Anthony said as my own Blog, is "Bloggling" minded.. or something in that respect... again I am posting this on my blog, and will leave a link so you can come and finish reading there and please feel free to comment Rhia

(Part 3) My "intuition" was right... it just never ends... I feel as if all my life will be one big ball of a foggy brained, Autoimmune RA/Lupus/Sjögren's and who knows what else of a disaster...

Part3 - How many Opinions does it take from who many "Physicians" before you feel at ease? Peering into the Looking Glass of Autoimmune Illnesses, and deciding where to begin.... and where to END? 

Can you put your "health" in the hands of those that are supposed to be "educated", who have been through testing, who have taken a "vow" to  - "Do No Harm?" - and these days what does that small sentence truly mean.... "Do NO Harm"?

Trust... Trust who? Well from what I've experienced over the past 3 to 4 weeks, I am not sure who is the real insane person around? The doctors, the insurance company, me... or whom... but I do know NOTHING is getting better at all.

I called my pain physician's office yesterday. The pain that has decided to plague my body for a 3rd time in about 18 months has reared its ugly head again. I tried to tell him last week, when my medication for the pain pump to be refilled was NOT THERE! It was sitting in some office in Phoenix AZ! So, I go without my "extra boluses" so I do NOT run out over the weekend and the pump start "beeping"... and run out before Monday. I had already been "hurting" worse for days before that. Given the fact that I was NOT given my biologic when it should have been given, then surgery, then not being able to do anything for 6 weeks because of the surgery, then I got sick and was ill for weeks, turned around and low and behold the beginnings of not just ONE flare but TWO! RA and Lupus! Then another 14 days to try to get SOME KIND of BIOLOGIC the insurance WOULD pay for, and then waited for the prior authorization that went to the wrong pharmacy. So, that all had to be redone and sent to the proper place. All the while I knew my body was in the stages of rebelling. I felt it each day getting worse. Worse to the place, that once again I could sit in this floor, scream, cry, and beg... but that would not do a thing, but cause me to hurt worse.

So, after NO call back from my pain doctors office yesterday, I knew something was "wrong"... where his head is, and why after going through ALL he has watched me go through. Knowing my extreme health issues, or supposed to be knowing them, I get a call from his "nurse" who is a jackass anyway. I already had issues with her a couple of months ago over NOT getting my medication called in, before I ran out. Well, today was the day for me to call it in. When she called, I knew something was up. She goes on to tell me, that my doctor is calling me in some.... and he thought it would help with the "inflammation"... Well red flags went up everywhere... so out of my mouth came is it an NSAID? She paused, said wait a moment, and of course came back to say yes, Well, right back at you NO! Now this doctor has been seeing me since 2008, knowing ALL of my issues, and he knows I've had not just ONE heart attack but TWO! That is NOT including the GERD and all of my stomach issues. So, why the hell he became so "weird" about all of a sudden NOT upping my pain meds for a month is beyond my capacity to understand at this moment. After ALL he has watched me go through, and also portions of this beyond my control, their own crap with my medication not being there, thus I had to cut my meds "way back" for like 5 days... I already was in severe pain due to the entire biologic stuff... and now all of a sudden, for no reason, he decided to try to give me an NSAID? Hell, I would BE ON THEM, IF I could! I just looked at the phone as she said, well, I will call your other meds in Monday? What the hell? I am supposed to run out Monday, and they MAIL THEM FROM DALLAS! She knows that she cannot wait until the last moment to do that. OMG, I was ready to explode! Conveniently, he is out of the office "today". mmmmmm, he always is when you "need" something. I am still just blown away by his attitude, and I had even picked up on it, when I was at the office both times. Something at his office seems "off" now too.

What the hell is up with doctors all of a sudden? I've never seen so many weird changes of attitude, of how they treat their long term patients,  and the plethora of "lack of caring"... that I've witnessed in just three weeks.

Honestly, I trust my OWN judgement at this moment. more than I do several of my own physicians. I get the impression that their "realms" of health care have just about flown out the window when it comes to any patients who are on Medicare, Medicaid or a Medicare Advantage Plan. I've said it once, twice, and three times, plus... the government has their fingers so tied into all of it, that doctors cannot possibly do their jobs taking care of patients, all the while either the DEA, FDA, Medical Board, Medicare, Medicaid, other insurance companies, the government as a whole as ALL breathing down their necks.

I believe at last count, I've seen and heard at least 5 or 6 articles about "bad pain medication" in just the past week. Everyday over the course of this week there is yet another "gripe", whine and bitch about "pain medications" and addictions. Let me tell you right now, unless you have walked for ONE DAY, hell ONE HOUR in the severe amount of ever growing pain that myself along with so many of us deal with, you cannot imagine what that feels like, You cannot imagine in any way shape or form, how your entire body feels like it is a hot burning coal of fire.... from the tip top of your head, all the way down into the bottoms of your feet.

Then let's see. You have a job, you need to go to work. You need to take care of your home, your kids, your LIFE! HOW can anyone stand up and "deny" something for someone that they know will IMPROVE their quality of life?

The saddest thing about all of this.... it is just getting worse day by day... you have no where to turn anymore... family gives up, spouses leave, you are in nothing but a place of despair. Where do you go, which direction will lead you to an answer?

NO ONE, and I mean NO ONE should have to SUFFER THIS TYPE OF PAIN! Not one soul, should have to endure the kind of brain rattling, aching, like someone took a baseball bat and beat you from your toes to your head type of pain.

Our bodies are marvelous machines... when they are well oiled, taken care of , don't get knocked out of alignment, they can do some magnificent things. Yet, you allow your body to  get run down, draw upon some strange illness, whether it be a bacteria, a virus, some kind of chain reaction in our nervous systems, or just decides it is just going to run on 4 cylinders instead of 6 or 8, you are in one screwed up mess.

Just as I took a break for a few minutes, I saw an email come in from MedPage. I had been taking their newsletters for a long time, then stopped for awhile. About 2 months ago, as the latest and greatest news kept breaking about this, that and the other, when it comes to the health care industry (should say profession)... industry... yes, just another "brickness" in the wall I fear...

I come across this article. Much of it sums up exactly what I have been trying to portrait through my own words in these (parts... up to 3 now) posts about all of the crap that flies around throughout the entire medical world.

I will post the URL in this when I get my own "fogged" wisdom out of a brain that feels as if it has been drug through the mud... and not much med for sure... Why is it that Medicare in itself had doctors spend BILLIONS of dollars on "electronic systems" that now cause MORE red tape, MORE work, MORE PAPER, more time... and MORE Of everything BUT the ONE thing doctors are to do. spend TIME with their PATIENTS! In the "age of technology", when "phone" messages fly through the air, and not over a wire... when you can connect your computer to the internet and never plug in a wire, does it NOW take more papers than ever to see a doctor? I've been seeing my same pain specialist now for at least 6 years, for all of the exact things... yet I had to "fill out" an entire new set of paperwork that was about 10 pages of crap, they already knew and had on me. It was a waste of time, money, and they probably never looked at it what so ever. I would be willing to bet it went right into the recycle bin. Now my husband is a first time patient, and he sees the doctor for the first time, I can see "filling out" forms. But, my gosh, about 10 pages of that was just "stuff" to either initial or sign. And it is just exactly what the article I read talks about. MORE of a doctors and the professionals time spent screwing around SIGNING CRAP that means nothing to a patients level of care! When your physician has to spend more time looking down at a "whatever kind of lap tablet" that thing is they carry around now typing on, rather than examining you the patient, listening to you the patient, checking your heart, lungs, looking over your skin, everything else on you.... but honestly, I have watched my doctors lately squirm when they see me coming with my yellow or hot pink piece of paper they know is "my list", I can see them wanting to jump out of the window and run. Mine know I am GOING to have questions that I fully intend on getting answered before they leave that room. No more of going "unprepared". When I am off to the doctor, especially for a follow up that I've had the appointment for now for months, or I am seeing a new specialist for new symptoms, I will have them in that office until I feel I am satisfied with the answers. Yet, I've watched my own PCP one time set there and talk for an hour with me, then the next he stands with his hand on the door knob just waiting to catch a moment, that he can quickly escape. I realize he has other patients. I also know he does, thus I will not "over step" my grounds. But, I feel I deserve my "allotted" time. What they do though, is "allot" that same amount of time to about 6 patients, then that is there fault. If they overbook, just like the airlines do, then someone is going to have to either wait, or be hurried through. Normally, I find I am either the one being hurried through, OR I am the very LAST one called in for that "time slot" for sure. And what about this new thing of bringing you back to spend another 2 hours in that damned ice box cold exam room, when you could be sitting at least out in waiting area, catching everyone's germs as they come in! Nothing burns me up than for me to walk in, and 3 or 4 people come in behind me, all stating their appointments are scheduled the same time as mine! Hell, mine can't even see me and make a decent diagnosis and treatment plan alone with just me, much less 4 or 5 other "sick" people in the mix. Then of course here comes the nurse, asks all the questions, half way gets down what you say, takes your vitals, and says "okay" I will get all of this logged in and he/she will be in within a bit.... yeah right.... a bit my butt... more like 2 plus hours later, you have worn the seat completely out of your pants,  you have stretched, walked, watched the same pictures of their kids go by in a digital frame that have been there for years, looked out the window, listened to their elevator music/radio and all of the whispering, crying, hollering, and just about the time you are ready to explode, here they are "cordially" explaining about the emergency, and being "sorry" for being late... yeah right where the hell is my $25.00 you would charge me for being late? Some how that shoe never quite fits over on your foot, but it certainly does theirs.

I am so totally, utterly, completely, within, without, absolutely SICK AND TIRED... OF THE ENTIRE MEDICAL SCENE, that I could literally jump off this house, land on my two damned hurting legs... and I probably would feel better than I do right now!
What makes this even worse for me, is that this time the "brain fog", is more like a brain super mud... no transparency, no light, no even haze, just a thick mass of, I am not sure what I am saying or meaning from one moment to the next. I am catching myself repeating things in my postings, emails, even to what I say to Jim and Mom. Honestly, I cannot remember that I did just "write that" in the last post. Or that I told Mom that on the phone yesterday. I can't remember I saw this movie a month ago, or there would be no way for me to ever get home without a list. Whether I need 5 things or 50, nothing seems to "stick". All just seems to be sucked in a black, muddy sludge... along with all of the intense physical pain that surrounds me, and engulfs me.

I know people must be just thinking "oh, she is just having a bad few days", I am not one to "repeat" myself or forget what I just said. I do at times, but this is so much different...

continuing now on Sunday the 9th of March

I've tried to decide exactly how I want to handle the several glaring issues staring me down this next couple of weeks. I've  thought about everything from getting my teeth fixed, and how the heck I was going to get into that specialist in Dallas BEFORE they all fall completely out! This is NO LIE! I put the coffee on at 2:00 am this morning... yes the clocks rolled back and rather sleep you would think, but nope not me, I am wide awake. I happen to hear some of the neighbors coming home, opening car doors and slamming them, and their music just a blaring... yet my household, other than myself knew nothing. Jim has been "ill" again with flu like symptoms, so I decided or we decided I did not need to be exposed anymore than I had to. So I've been disinfecting everything. So, I went to take yet another BC powder, and I always have to have a small bite of something after I take one. they are quite unpleasant especially if any of it does not go down with the first drink. So, I grabbed a tiny piece of dark chocolate that was sitting there in the fridge. Now of course it is cold so it is a bit harder than not being out for awhile. But, just as I put it in my mouth and began to chew down on it, I felt something hard in my mouth. Well, it was not that bite of chocolate, because nothing was in it. So, I go "digging" around and find an entire back piece of one of my top back jaw teeth out. About the time the coffee is ready, I pour a cup and still something felt "odd" about that time I feel another piece of something hard, like a little sliver of some kind. Yes, sir it was another piece of tooth, BUT it came from a different tooth on the other  side of my mouth. Then I got to my computer, went to take one of my medications, and again I feel something "hard" in my mouth (not the pill) ... and again for a 3rd time off of another tooth, a chunk fell out! 
So, here I am at 2:30 am standing in my kitchen, literally watching my teeth fall apart. That was NOT the way I intended on spending my Early Sunday Morning. In fact, I had the intention last evening of possibly going to a new church this morning, depending on how I felt. This severe pain in my legs has just about sent me to the nut house, honestly. My head is not on straight, the brain fog is just beyond belief, and I am so utterly disappointed with the entire world right now, I am not sure where to even begin, 
My story sounds like child's play compared to some I realize. But, I tell you when you have been through what I've dealt with in the past 8 weeks or so, and don't forget it is just now a bit over 6 weeks since I had double hernia surgery. In fact this is really the 1st weekend I've been able to feel like I can do some things I had not been able to yet. I did vacuum the house, and I've done some bending over and picking things up out of the yard, trimming back some of my bushes that will hopefully come out soon... I still have not been on the exercise bike yet but that is due to the leg pain. I fear that my legs may hurt worse. With the entire situation with my pain doctor and his witch of a nurse, I assuredly do not want to get to hurting any worse if I can help it. 
I have SO MUCH I NEED  & MUST get done, or I won't be able to make the trip to DC. That will just break my heart. I've even thought about shortening the trip for myself, and coming home Friday. then let Jim stay until Sunday. That way the dogs only have to be watched after on Thursday and Friday until I get home whenever, and then Jim would fly in on Sunday and I'd have to go and pick him up. I am just not sure I can go yet at all, not in the shape I am in at this moment. But, it could be I would be able to at least make the Fly In... get to meet his Mom, and then they could have a really good visit, and catch up. It's been over 10 years since they have seen each other in person. So, it is totally important for him to try and go. Of course he also has so many issues with health, mainly severe arm, neck and back pain, I am not sure he will go and can withstand the trip either. 
His idea is "well I hurt if I am at home or in DC... well that is true but when you are at home... you can have your own "nervous breakdowns" without someone else knowing it. 

There is a great deal more I want to say here; so this post may have a 4th portion to it. 

I am not sure if I will do it that way, or just call this one "finished".... and begin anew ... probably begin new. Due to "perspectives" I realize that not everyone will "agree" or "disagree" with me on some things I've said, and believe.... 

But, I do believe that "WE" all of us .... talking now about the Chronically Ill Patients,  with illnesses that take away all that is good in our lives, and turn us inside out and upside down... Autoimmune Arthritis... and all of the other Autoimmune Illnesses... along with Chronic Pain, people suffering from FM (which I still believe is an autoimmune illness)... Chronic Fatigue Syndrome... and the other things like my friend just discovered... she has "Chiari"... where a portion of her brain stem is literally gone down into her spinal canal and is being "crushed"! It has taken all of her life of fussing, crying begging, screaming, tests after tests, and in a "test" for something else, they "found" this syndrome she was born with. 
due to the nature of this malformation... and the unbelievable story that it has taken over (I think she is about 50 years old, but she looks like she is 35) :):) for them to find this... she also has Lupus...  of which she is being treated for... Here is a link that explains this malformation... she does not know yet if she faces surgery or what... but by gosh anyone would be totally freaked out if they got this diagnosis after all these years.

http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm

Please comment.... I want to hear from YOU!!!!