Some thing that ALL of us need to do - Chronically Ill or not.. and I felt it kind something I wanted to post... even if just to reminds MYSELF to do this...

We should ALL take HEED - If WE are not 'UP TO SPEED" ourselves then WE cannot HELP others... sick or not... so many of us "feel guilty" when you feel like you really cannot do something, but you do it anyway.... Thought I would share this

IFAA Post and an article about the "Cost of Chronic Pain"

http://www.motherearthliving.com/health-and-wellness/mind-and-body/cost-of-chronic-pain-ze0z1404zhou.aspx?PageId=1


Gosh WE should ALL know about this one!!! BBetween astronomical prices of medications, physicians, (even WITH insurance), supplements, try having a "surgery"... I know that my "body" has parts in it, and has been "Overhauled" and probably have a "net worth" of $500,000.00 OR MORE!!!

 My 6 week stay in 2010 in two hospitals was over 100,000.000!!!!

And for each "replacement" surgery, you can bet on 25000.00 to 75,000.00 by the time ALL get their part...

Just the costs of labs, CT's, MRI's, any type of radiology procedure... I have a bill here for the Discogram... it was almost $20,000.00!!!!!!

And because I did NOT realize it was NOT filed as an "outpatient procedure" that would have already been 250.00 out of pocket, I owe almost 700.00 because it filed as a "radiology" procedure, so my part is 20%!!!!!!

And I am supposed to pay that off in two months???? ON a "salary" that is BARELY over 1,000.00 A MONTH!!!!!!

Hell, my TEETH, cost almost 15,000.00 when it was said and done....

The "NEVER ENDING" Saga of Rhia, Autoimmune illnesses, cellulitis, abscesses, and feeling the pain, disgust, frustration for others like myself that seem to NEVER get a break

This is a post I sent to a friend on Facebook... she also is just having one hell u va time, dealing with "crap", illnesses, and all that entails when you feel life NEVER gives you a break! I realize some of it I've already posted, but believe me... I feel it is totally worth repetition... so others KNOW they are NOT alone!

 

 

 

  I SO, SO, SO can empathize with you and how you feel. It has been so much the same for myself. Between the already issues with Lupus, RA, and so forth, then the accident last year in March that my husband was in, now he has left and moved back to WA state.. we are filing for a divorce and honestly I am NOT sure to this moment WHY? Then I need lower back surgery, then my Mom in the midst of me finding out what was wrong with my hips and legs, which was my back, she comes down with a severe hip issue, that also turns out to be her lumbar spine also. She is 80 years old, and they do NOT even want to discuss surgery on her...but they are trying with medication, PT and supposed to do some epidural injections on her. About the time we got those scheduled her last living sibling, a younger sister, passed away of a rare stomach cancer, she had been fighting for a couple of years, then BOTH of us come down with some kind of stomach virus, & I spent several weeks of it seeming to come and go, and even got ill Sunday morning...I was so upset, I felt "fine" was dressed, and was about to walk out the door, and my stomach felt "odd" and sure enough, I almost did not make it to that bathroom and was sick to my stomach again, out of the blue... then I have been dealing with a "lump" on my mid left thigh now for about 9 weeks... my PCP thought it was cellulitis, and of course with my immune system being so compromised, he immediately put me on TWO antibiotics, which helped some, but after 3 ROUNDS of them, 7 days each, he wanted me to have a surgeon look at it, and cut it out...well, I had a hard time finding a surgeon close enough that took my insurance, finally did, but he could not see me for over a week! So, all of a sudden this "lump" that showed no signs of an outside infection... has not been red, warm, or appearing to be infected on the outside, but a week before I was to see the surgeon I woke up to it being very red, warm, and appeared to almost be trying to burst open... so I quickly called mt PCP and told him... so he put me on another round of the antibiotics until I could see the surgeon. Well by the time I saw the surgeon which was last Friday, it has abscessed inside, and he had to "CUT" it open, and let all of the infection out of it! He also sent some to be cultured, and I must have had "two layers" of infection. One kind of shallow, but another much deeper. Now he did this in his office, just injecting lidocaine in it, which hurt like hell and burned worse...and I am "tough"... nothing usually bothers me... but then I had to take the bandages off twice daily, after getting home, and "clean it out" with Q-tips and peroxide... when I took the bandage off the first time on Saturday, OMG I have a HOLE in my thigh deep to it almost feels like it is to my bone, and wide... like 2 inches deep and that wide... I almost could not do it, but I knew I had to.. so I did that and then finally yesterday, it was not quite as painful so I took a shower and used antibacterial dial liquid body wash which I had already been using, and he said to allow the soap and water to get into it, and clean it out... I did, and it hurt some but not all that bad... but then this morning, I began to take off the bandage and it again looked awful to me... it is still draining a bit... but I see him tomorrow thank goodness... now he did not address the "other lump" on my right thigh, almost in the same spot as this first one. It came up after my PCP began me on antibiotics, but I never said anything about it, thinking that medication would take care of it also... well it is still there, a bit larger, and I fear it may be the same thing. I had told the surgeon's nurse Friday, but I guess he forgot about that once he was working on this other one. So, I've got to point it out to him... it is just like the other one... it shows no "outside" appearance of an infection, it is just a lump under the skin.... to top that off my Rheumy wanted to put me on a new RA Medication, but before we could change I had to do a whole entourage of blood work, TB testing, Hepatitis, etc... well all was "okay

accept the TB test... that particular test has to be done just a few hours after the blood is drawn or it can come back not accurate... so mine came be "indecisive"... so I needed a damned chest Xray to show the test was just off... well I could not again find anyone close that took this stupid insurance, so I finally was just going to pay our Urgent care to have it done. Well, the order got misplaced that my Rheumy sent them..then due to this lump, my Mom, my Aunt passing away, I got delayed in doing the X-ray... so when I went out to have it done last week, they had NO order, or they just could not find it, and when I called and had my Rheumy fax it, it was for 2 views instead of one... so I did not want to have to pay double if it was not necessary, so I had to get hold of my Rheumy... and have them fax a new order for one view... I FINALLY got that done, and now due to the lump, the infection, the delay of the Xray... I've not had any RA meds in like 9 weeks or more!!! So, my RA, is so bad.. And within all of that is even more crap that has and is happening... and I am just frustrated, upset, disgusted, mad, and all the things you feel... it is like some of us NEVER get a break... EVERYTHING in my life has always been "complicated".... and it is just too old... for sure....there are days I want to crawl under my bed to never return.... and between all of that... my Pug has also had stomach problems and been sick to her stomach off and on also....

Let The Water Come and Carry You Away....

I had posted a long post last night, and for some reason FB lost it! I know better, usually I make sure I copy them before I hit the "send" button.... but the jest of it was my thoughts yesterday about our lives, especially mine at this time, being like a "river".... we go through so many different aspects, changes, sometimes we feel they are not so great, and often we don't really grasp the "why's", when, how of life. I had really found comfort last night, in thinking about my life, and once again it evolving, revolving, and "flowing" forward... most rivers never flow backwards... thus once the water has flown under that bridge, it will never go back... such as life... once this moment is over, it is done... finished... just as by our "Higherpower" said about the "7th" day of Earth... "'tis finished"... and was also know ass when all happened as it did on the "Mountain" once his Son has passed away, again, Tis Finished.... I am not trying to "make" this about "religion" at all, but those events for my own personal self remind me, that I am in this place, at this time, for a specific purpose... why things have happened as they have I don't truly know... some I've had an "open heart to" and it seems I've found a "new vision"... I am seeing my own world, and all the world with new eyes, along with a new mind set.... no longer shall I "blame" myself for what I have no control over... we cannot control actions that we can't control.... we can't "make" or not make someone else do something, we cannot change the weather, or stop the rain from falling. We cannot stop Mother Nature" and even though we can gripe and moan about it, it is just as it is... and as is supposed to be...I really wished I had not "lost" my post from last night.... it was a "Revelation" for me... and the way I worded it was what came through my heart and mind so clearly... but again I also "can't" control Facebook either.... SO, what I will finish this with, as I go and get ready to attend church again this morning is - one of my very favorite songs.... the lyrics "fit" so well, and it was THE SONG I heard back when I was 21 years old... that on a fateful night CHANGED the direction of my "flow of life" forever. Had the events that happened that night, happened any differently, I may not even be here, or I could be "lost" in a sea of horrible demise... so the song.... the lyrics... - "so much time to make up everywhere you turn, time we have wasted on the way... so much water moving underneath the bridge... let eh water come and carry us away...."   We often "lose" so much of life, time, thought... by "wasting" it on the things we cannot control.... yet if you allow those waters to flow... underneath that bridge... it will certainly carry you exactly where you need to be... love you guys and gals that support me so much... Rhia


Wasted On The Way Lyrics

from Greatest Hits [ORIGINAL RECORDING REMASTERED]
"Wasted On The Way" is track #14 on the album Greatest Hits [

"Wasted On The Way"

[Intro. (Acoustic Guitar and Electric Piano)]

Look around me
I can see my life before me
Running rings around the way it used to be

I am older now
I have more than what I wanted
But I wish that I had started long before I did

And there's so much time to make up everywhere you turn
Time we have wasted on the way
So much water moving underneath the bridge
Let the water come and carry us away

[Instrumental (Fiddle)]

Oh, when you were young
Did you question all the answers
Did you envy all the dancers who had all the nerve

Look around you know
You must go for what you wanted
Look at all my friends who did and got what they deserved

So much time to make up everywhere you turn
Time we have wasted on the way
So much water moving underneath the bridge
Let the water come and carry us away

So much love to make up everywhere you turn
Love we have wasted on the way
So much water moving underneath the bridge
Let the water come and carry us away
Let the water come and carry us away



Read more: Crosby Stills Nash - Wasted On The Way Lyrics |

The "Longest" Day Alzheimer's Awareness Month....

http://www.alz.org/abam/overview.asp

The "Longest" Day Alzheimer's Awareness Month....

"Go Purple" and Pledge to Help Fight Alzheimer's Disease! June is the awareness month for this horrible disease...

Such a critical health issue, that effects so many around the globe. My Grandfather suffered from this tragic disease, and my Grandmother had dementia, which seemed like the beginnings of Alzheimer's also. It was terrible and sad to watch how much this truly changed my Grandfather. Every once in a while, you could see the glimmer in his eyes that he knew myself and my 2 kids. My daughter was only about 2 years old at the time, would crawl up and sit in his lap and put her arms around him! You could tell he knew who she was, and in the next moment, he maybe frightened that "men" were watching through the windows, or rats were coming through the floor... it is a horribly bad situation, that many live with for years and years, both the patient and the family members.


Find on Facebook at:

https://www.facebook.com/actionalz 

RA News, Vets and Chronic Pain, & more headlines of the Medical Issues of Autoimmune, Chronic Pain and Chronic Illnesses

http://www.medpagetoday.com/Washington-Watch/Washington-Watch/52086?xid=nl_mpt_DHE_2015-06-12&eun=g773630d0r

Vets and Chronic Pain above...

http://www.medpagetoday.com/MeetingCoverage/EULAR/52084?xid=nl_mpt_DHE_2015-06-12&eun=g773630d0r

Phase III in New RA Medication sees great results...

Baricitinib Shines in Phase III for RA above...

http://www.medpagetoday.com/Rheumatology/Arthritis/52082?xid=nl_mpt_DHE_2015-06-12&eun=g773630d0r

Pain Sensitivity Spikes in OA Patients With Sleep Problems - link above...

"Fitness Friday" - WEGO Health Writer's Challenge for April 24th, 2015

Oddly enough here I sit writing when I actually am supposed to be out walking with my spouse! Due to all of his health issues, pain and so forth from the severe accident a year ago last month, it has taken him a very long time, well a year, to get to the place he feels he CAN somewhat take a walk. And the thing is before his accident I walked daily, 7 days a week, at least a mile. I walked my drive way back and forth every morning, rain, shine, just not in the cold... joints and bones HATE the cold weather.

Now, I had for various reasons almost stopped my "daily routine" of exercise, walking, and riding an elliptical when the weather does not allow me outside... Between all of my own heath issues, the long drawn out process (a year also, really more) to FINALLY have MY DENTURES and THE LOWER ONES ARE REALLY ANCHORED down NOW!!! What a miracle.  I thought that day may never come. In fact, I was just in my dentists office today. I had some issues with some of the material he had used when making the little places in the denture fit over the little mini implanted posts. So, I went in and he fixed that for me...

He did say all looks very well. That he could see I was taking care of the posts inside my jawbone, along with the dentures. So, he was so pleased with that. Gosh, I should be ELATED! After over $12,000.00 worth of work, plus blood, sweat and some tears They should be make out of gold, platinum and "precious stones"... LOL! I guess that would weigh me down so much, I would not be able to open my mouth, OR worse I would NEVER be able to shut it!!! As if I don't talk enough to drive a preacher to drink, Lord knows I don't need anything to make me keep my mouth open anymore than it already is.

So, my own exercise routine kind of went astray for a bit. I say that but in a way, I have been almost getting MORE exercise daily between shopping, cleaning, cooking, laundry, vacuuming, sweeping, dusting, and as that list continues on and on.... Days like when I vacuum then "shampoo" my carpets. They are not wall to wall, we have hardwood floors, but our huge area rugs in three of our rooms take a great deal of elbow grease to clean them. Well, I like to go over them twice, if possible. But, the last two times I confess I only made it once on them.

Anyway, I consider things like laundry, making the bed, chasing after our dogs, and cleaning up after them every day, all of my pulling weeds, tending to about 80 houseplants, that now need even more care because they are outside for the Spring and Summer. Still that means everyday watering... thus that is a workout in itself.

I will say since my husband began his regime of daily walking. He goes out about 4 to 5 times daily, and makes several laps around the driveway. I usually go out and do the same with him. Plus, I am beginning my own walking habit daily again since this weather is beginning to be warmer, yet not too warm.

I do some stretching exercises, and wished there were many more things I could do, like I used to be able to. As with many types of chronic illnesses, especially autoimmune illnesses that tend to strike you in the joints pretty often, there are many things I could do, yet no longer are feasible. I was never very "Athletic". But, about the time I turned 21, I wanted to be in better health, look better, and be able to wear "cute" clothes back then. I had a tiny bit of an issue with my weight as a teenager. I was never "obese", but I had about 20 pounds on me, right after my son was born. I was determined to shed ALL of the weight (which was about 20 pounds) that I had gained in the pregnancy. Then I also wanted to drop another 10 pounds or a bit more, in order to just look good. Not too thin, but to get to where I felt "good" about my own self, when I looked in the mirror. And that became a way of life for me. I walked at least 5 miles a day, took aerobics classes a couple times a week. Back then I did all of the lawn work, mowing, and everything in between. That was in addition to a full time job, two kids, and I at that time was going to college at night to hope to have at least an Associates Degree. Anyway, up until 2007 when my joints that were already giving me problems began to get so worn and I was in so much pain, I finally had to have both knees replaces, along with shoulder,
and other joint issues, that kept me from snow skiing, now I am really not supposed to mow, but I sure have been thinking about trying lately. Also at the time I was walking so much, and watched every bite of food that went into body. They used to tell the waiter or waitress in restaurant, to bring me a "head of lettuce" and a bottle of fat free Ranch Dressing and all would be fine!

So, my main exercise program now is to do my walking daily. Then I also take my chores and errands, and when possible I spread them out, so that every day I have something I could be doing that requires a bit more work. Whether that be the laundry, or vacuuming, shampooing carpets. I have LOTS of weed pulling outside to do now. Along with caring for all of my other plants and flowers  I also try to make my way around the market, or a big store like "Wally world" almost a "workout". By making sure I hit many isles, and try to make the most out of all of those steps too.

One of the "largest" work outs I get, unfortunately, I don't get to go that much is walking around the biggest Casino's in the world - the Winstar, in Oklahoma. Talk about getting your miles in. If I lived closer, I would just go there several times a week, just to walk and get so much exercise. I wouldn't even gamble, it would be just the walking all over that probably estimating 5 miles from one end all the way to the other.


I wished I could say I had this fabulous gym that I went to, and done Pilates each week and so forth. But, I must stick with my "fast paced walking" along with all of my daily chores and errands as my "exercise" to stay fit.

As it stands, between my same old walking, and housework, yard work errands, this is my "method of madness" when it comes to exercise

#HAWMC

WEGO Writers Challenge April 20th, 2015 - Reflection... Your ambitions, hopes and how things have came together for you - Reflection from Life, to Chronic Illness

Each of us, no matter whether we are an activist, voice, Ambassador, Volunteer, all have some set of "what we hope to help do, and what we feel we may gain from doing those particular activities.

Whether you give out lunches in your home town daily to the elderly, or you have a blog that is all about how you want to help others through horrendous illnesses, whether it be mental, physical, or emotional... for the most part, when do you any type of event that is "volunteering" it comes from within your heart and soul.

Most of us "expect nothing" back. We don't expect a "pay check". For many of us, notoriety, fame, being "patted" on the back is really nothing we feel is necessary. We "GIVE" because that is what we want to do. That simple act of "random kindness" gives us feeling enough inside knowing we did something "extra" for someone's day. Maybe that door you held open for someone behind you, helped them put a smile on their face, in the midst of a terrible day. That "E-card" to a friend who is ill, who maybe overwhelmed, who may be feeling like life is a bit too much, and their comes that special card, just when they need it the most.

So, reflection back on my life and all of my "volunteering" even when I was 13 years old and was the only "Candy Striper" at the hospital at that time. Those days there taught me so many valuable lessons about life, people, the medical field, and gave me a chance to give of myself freely.

From there, whether it be a shoulder to cry on, a friend needing a lift due to their car being on the blink, sharing a cup of coffee with someone upset, just telling the checker and the guy doing the sacking at the grocery store, "Thank You!" and that you appreciate their help.

I've had to "overcome" some issues when it comes to I guess you might call it "pride". Before I had all of the joint issues, surgeries, Lupus, RA, and so on, I usually took out my own baskets from the stores. It was just something I did, and of course many of our stores now don't even offer the service. Fortunately, our local grocery store that is here in Texas always offers the assistance, which is a good thing. I know for the elderly people it is a huge help, and when I am having issues with my back, or joints having had surgery, or just not feeling well. It truly does help to have someone take the basket out and put your groceries in the car. A great example for me just a couple of days ago. I noticed our market was really busy. They were trying to keep up with checking and getting the merchandise sacked. So, at first I told them, don't worry about it, I will just take it out myself this time. Well, I should have allowed them to. First of all, the way the parking lot is designed, you are on a slight slope as you come out of the store. Of course that makes it a bit easier to push the baskets. But, when I have a huge bill of items, or heavy items, that basket will try and "run away" from you outside. I had a gentleman that had his two young children with him, stop and help me hold the basket that day. I was so elated to see we still have some awesome people in this world. I commended him with a huge thank you, and I also commended him for having his two kids, and they were younger children with him at the store. Often times, you don't see as many men with their younger children especially at the store. So, it was just an all around "thanks" for everything I witnessed there within a few moments of this gentleman.

So, whether it maybe reflection on advocacy work, or having someone help you out when you least expect it, for me, my reflections are on those that do some wonderful things and their not expecting a "thank you" for it.

My "hopes" are that I also continue to "share" a helping hand or a thank you.  My goals are to become that "author and writer" of a book that truly will help others. Some of those things have suddenly within the last weeks came together.

Then there are many "detours" that come along, unexpected, that can delay all of those ambitions, hopes and what we feel we truly need to accomplish in our time here.

The chronic illnesses of course have all too often caused a delay in some of my goals, dreams and wishes. In fact, there are some of those things, that I may never be able to do again. At times that really bothers me. Yet, I also try and look back to remember when I DID do that thing, or I DID get to go to that concert, or vacation... or something as simple as now I am looking forward to being able to get away for a night, and have my Mom and I take a couple of hour trip to the Casino and possibly spend the night.

I also hope that my own health will hold out, so I can become a better advocate, activist and an Ambassador. I hope to be able to go back to Washington DC next March and once again "give voice" for ALL of us with these horrid arthritic illnesses.

I can also reflect on the facts that I feel I've "built" a very good repoire with the "non-profits" that I advocate for. Or really I should say I feel they have truly "taken me under their wing" and given me some amazing opportunities to be the advocate, activist, Ambassador and Volunteer that I want and will continue to want to be. So, I say a huge "Thank You" to all of those that are so incredible in the realms of health and helping others. 

#HAWMC

News To Muse - #HAWMC Wego's Writers Challenge 2015 "Breaking News"

First of all, I am sure, like myself, many of us really "want" to talk about our triumphs, yet we don't want to seem to be "gloating", "selfish", or as if we feel w are the only people in this world that are doing things "right".

The last 5 years have been up and down for me. Right off the very first, my main accomplishment, that took the entire year of 2014, was to become a "Platinum Ambassador" for the Arthritis Foundation! When I received the email telling me that, I was a bit more than elated. It did take a great deal of effort on my part to go that "extra mile" as it's called, to get to be in that "status" for the AF. Hand in hand with that, was my 2014 Washington DC Summit on the Hill visit, that I went on with the Arthritis Foundation, and I got to do ONE of the couple of things I had always dreamed of in life. That one was to "stand upon the steps of the White House" and tell my own story of the horrid nightmare of these illnesses, ranging from Rheumatoid Arthritis, osteoarthritis, JRA, and of course other autoimmune illnesses that can sometimes run hand in hand with them.

There I was, living my dream. I did get to tell my own story, several times to members of Congress and/or their legislative assistants. I did not really "stand upon the steps of the White House" to do it, but being in the Halls of Congress, both House and Senate was close enough.

I was proud that I had been able to develop a good relationship with my Federal Representative in my District, which included getting to go to a "Town Hall Meeting" last year when he was here, back home where I could also once again tell my story.

In the past 5 years, I've also got to live my first dream I guess you could say. I became a "published" author. What was even sweeter about that deal, was that I not only got one book published, but actually published 2 books, within about 6 months apart.

I am thrilled that my activist, advocate. and ambassador tasks are becoming more. In other words, rather than just contributing to my own Facebook, Twitter, Pinterest, and Blog; I've been able to do many other items of advocacy work with some very famous non-profits, which I feel in itself has been and will continue to be a remarkable force that within me, drives me to want to help others. So, those things I do that make life either less painful, less stressful, possibly develop research in the future, or even find a cure, I am thrilled that I have remained steadfast in my activism. I hope to for many years to come.

I've had several articles published about my activism, as well as about my books being published in our local newspaper. That is always something that gives me a feeling of "accomplishment". Even though there are many places I wished would pick up on my blogging and writing, if I never do, I will always and forever feel the pride that comes with having a blog that stays very up to date, and being able to see others follow me on Facebook or Twitter.

I have also had 3 different "Proclamations" dedicating an entire month to "Lupus Awareness". Two of those were actually were signed by the Governor of Texas. The other was signed by the Mayor of my town. I have those proudly framed and on my wall around my desk.

I've survived having ALL of my teeth pulled because of the Sjogren's literally rotting them from the inside out within less than a year. So, it took almost a year to the day that I spent several occasions in the dentist chair for hours, getting the rest pulled, then having dentures put in. Due to the Sjogren's then the last portion that actually just took place, was to have "mini implanted titanium pins" put into my bottom jaw, in order to hold my bottom dentures in place. Between my own bone structure, and the lack of saliva because of the Sjogren's, I spent about 4 months trying to keep those bottom ones from "floating" around anywhere they pleased. I just finished the process up on March 31st, a few days ago. Believe me, as many things in life can be nerve racking, having that many teeth have to be pulled (even though some had not fallen out, they showed in the special digital X-ray to be all rotted). I would not wish any of that on an enemy. But, sometimes we have no choice in life but to do something that is not really all that pleasant.

So, all in all, even though I am not one to be able to "pat myself on the back", or "toot my own horn", I will say that over the years I've been elated with my own actions that lead into helping others. Those are the moments that I am the proudest of.


WEGO Writer's Month Challenge  #HAWMC

Fatigue, Stress, Pain and the Realms of Autoimmune Illnesses bringing on more or worsened flares

I had just read and article about how many of the medications used for RA; along with Lupus, Sjogren's and many of the other autoimmune illnesses can possibly lessen the disease progression, when it comes to the joints, organs, and body. Yet, there is still a huge issue, that seems is not often controlled, or controlled enough with these. That is fatigue.

Fatigue, and I am speaking of the bone-tired, extremely weary, almost daily type of severe fatigue, that sleep, rest, nor many of the medications we use help or help enough. Those of us with Autoimmune illnesses know this so well. Even though our "minds" want to give us that extra "push" of energy, just like the "spoons" theory, or any type of "idea" such as comparing how many "units" of energy we have, it at times seems to never be enough. We run out of physical "steam" long before we complete all of the tasks we wish to.

It can bring a spiral of feelings and emotions when this happens. Guilt, hopelessness, feeling "less than", or as if you are letting a spouse, job, family, friends and yourself "down" because you just cannot shake that bone tiredness.

Even though we have many things that are out there to help try to battle the bone tired fatigue, and the almost unbearable pain at times, we still are never quite "over" it... or have total relief from any of it.

I've tried to envision having a period of "remission" since day one of finding out about the autoimmune illnesses/syndromes. I really can't think of any "long period of time" that "all" symptoms were gone. It just has not happened. I feel I battle 1,2,3 or more symptoms all the time. They are there underlying, waiting on the time when I am most vulnerable, and then come on with a stronghold.

It matters not, if it is Lupus, RA, Sjogren's, Raynaud's, Pernicious Anemia, MS... and the list goes on for 100's of different AI illnesses, one of them are always right in my face, setting on my shoulders, making my body scream out... I may not "scream" out loud, but my BODY is begging for a "vacation", a time of NO symptoms, to be let off the hook, to take a sabatical from the aches, pains, mental fog, fatigue, rashes, mouth ulcers, skin problems... all of them or even one of them feel like I could just lose it at any given moment. The old adage that we are never given more than we can bear... some of that maybe true... but when you are truly suffering from a daily, moment, hour, minute, breaths space, or with each step you take, something feels wrong. You "feel" whether physically, mentally, emotionally, or any of the combination of those may just push you right over the cliff! I went through that with the most horrid migraine headaches for many, many years. From the time I turned 17 until about 7 years ago, those headaches ruled my life for the most part.

I might be out headache free, whether working, dancing, out shopping, cleaning house, or whatever, and be hit with such a vengance of pain and nausea, that all I could think of, is whatever it takes - GET RID of this FREAKING HEADACHE!!!! Anyone who has any types of these headaches, or those that deal with chronic pain and/or illness(es) can totally relate. I have honestly heard of some with such intractable pain that take their own lives. They have reached a place that being on Earth they feel is just hell... and nothing will ever change that. I never thought I would be able to go even a week without one of the damned things. And I spent many day and nights, either at home, sick as a dog with them, or sick at work, with my head on the desk, or in the ER, begging for them to just make it stop. I went through every type of treatment, doctor, and medication known to man for them at the time. From pain medications (Butalbital) was one my doctors used quite a bit back then, to chiropractors, PT, other stronger pain medications, to an Ergot(which I am highly NOT able to take especially due to my reaction that I had, then my heart attacks) , to having the occipital nerves in the back of my neck injected... you name it, I tried it... and nothing really "worked"... some of them would at least get me to a place that I could withstand the severity of the pain and nausea, but other than when I was pregnant with my son, then 5 year later with my daughter, I thought I would bear the burden of those things on my back until eternity.

Well, I suffered for many years. They would wax and wane... from time to time, I would find deliverance from them, and other times, I felt I was constantly battling a severe headache. Yet, when I FINALLY begin to get treatment for the Autoimmune Illnesses, had several joint replacements, including a shoulder, and also surgery on the other shoulder and elbow... and also cervical neck surgery... and the adding of an incredible pain specialist, now I have what I call a "Lupus Migraine"... they come on when I flare badly with the Lupus. Yet, usually an injection of a corticosteroid, like Solu-Medrol will knock them out. It make take a few days, usually at least 2 days, sometimes 3... with that and then the "high step down dose" of prednisone for 10 to 14 days, will remedy one, until I flare again. I've learned over the years, that just like arthritis, autoimmune illnesses, chronic pain, joint issues... when the WEATHER acts up, you can bet I will have a severe headache, and of course usually the joint pain, stiffness, etc... all come on with high humidity, a dramatic change in the barometric pressure, a dramatic drop or rise in temperature, etc... 99% of the time, can be "diagnosed" by many of us before the weather even reaches us.

So, my own conclusion now about the migraines that I have are "inflammatory" headaches. That is why a corticosteroid injection can get them under control, whereas regular "pain medications" no matter how strong or weak... just will not reduce that inflammatory process behind a "Lupus Migraine"... and FYI that is MY OPINION... and what I have gleamed from them, and the injections. So, I don't know if physicians would agree, but I do know my PCP, takes me seriously. When I call with one of these headaches, he has me immediately come in, get the injection and the script for the step down dose of Prednisone.

Why the headaches somewhat "improved"... well improved is not really the term, they have "changed"... who knows... possibly any and all of the things that have come about with the AI and chronic pain issues... I just know now... or usually (I have had an extremely bad one, and I am not shaking it as quickly as usual.

But, I could probably name dozens of reasons of why they have migrated to being different, age, hormones, illnesses, medications, weather, living in a different place, stress, and on and on....

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.

The Movie "Cake" Comes Out and Receives Reviews - I feel Jennifer Aniston Brings Light to Chronic Pain Patients

I noticed several "not so great" reviews of the movie. None of them were really putting down Jennifer Aniston and her role that she played, but moreover it seemed like the critics viewed the script as being "watered down" from its original writing. I believe originally it must have went out on a limb even further to depict the life that so many of us totally understand. This is NOT some fairy tale, or some kind of "mystery novel", or just another movie. It is depicting a very true sense of what any and all of us have been through chronic pain and/or chronic illness have in our own reality, daily. We live this over and over again. The pain, the anger, the place and time we want to throw in the towel, give up, and say NO MORE! 

Anyone who goes through pain such as this nagging, agitating, never ending, daily, grinding, aching, stabbing, just RAW type of something you know you may have to continue to live with day after day, month after month, year after year.... there comes a place for many of us, that we must stand back, and kind of "observe" what is happening to us. You add in the amount of stress, of trying to hold it together for a job, for a family, a spouse, or for the world "outside". 
No one ever wants to appear "weak"... and some where down the line, we have had hammered into our brains, thoughts, and reality that showing "pain" in any form is a true sign of weakness, of not being able to weather the storm, of being someone "less than", and rather than be draped in understanding and help, we wind up totally alone, all of our friends and family suddenly disappear, and we seem to be just a heap of flesh and bone, that others can't deal with. 
You will find in your own walk with pain, that others, whether it be family, a spouse, close friends, even your doctors and medical professionals want to "shed" themselves of you. The idea that they have to watch "you" in such pain, brings them to think about their own life, and they almost act as if "pain" is contagious. You are carrying something around they can "catch" like the flu or a cold, so they shun you. 

I've had to deal with physicians back over 20 years ago, when I began having migraines. At that period of time & even to this modern day of medicine, some physicians have this "ideology"  that "women" are complainers. Either they want to blame our pain and illness on "stress" or another huge one was "depression", or that it is "hormones", and many often just wanted to press that the female gender were more likely to use "pain" as a crutch. I've even on more than one occasion dealt with physicians that actually believed I was just some woman looking for "drugs" rather than the reality I was in horrid pain. 
Men as a whole, have always been taken more seriously when it comes to pain. If two people, one a woman, and one a man, came into the emergency room complaining of severe pain, you used to be able to bet the man would get "treatment" not only more quickly, but probably medication and help that would be able to help with the pain. The woman on the other hand maybe sent away, with some kind of excuse, and told to see their doctors the next day and so forth. 
Things have changed somewhat in the past 10 to 12 years, and we as the female species tend to be taken more seriously when it comes to pain. I can recall the day I drove myself to the ER, having a heart attack, in pain. and they actually took me seriously. 

Yet, I had been to that exact same ER on many occasions before that with a severe, intractable migraine, and depending on which physician was on duty at that moment, it was a crap shoot as to whether I would receive the proper treatment, or be a "guinea pig" for something I knew would not work, and then sent home without the help I needed. In the years from about the age of 21 through my early 40's I watched this happen again and again. Whether it was the ER, my doctors office, or a clinic, I never quite knew how I would be treated. Like I said above, I had been given just about every crack pot diagnosis there was because of being female. I am sure many doctors out there will deny that, and most of them are probably now retired or have passed away. Yet, I've ran into the exact same mind set recently. You can guarantee, with the ongoing health issues I have now, if I get even a "hint" of being put off, or not taken seriously about my health problems , I am out of that office, down the road and looking for a new physician. 
I've learned no one has to take being treated as if they are not telling the truth, or not being taken seriously. 

I've had to learn the lesson that physicians' are also humans. They have been looked upon as some "special species" that make no mistakes, everything they tel us we should take to heart very seriously, and that you NEVER not do as your doctors advise. I am here to tell you, doctors are not PERFECT. The "advice" they give us as patients is "advice". Just because a physician recommends a certain test, treatment, medication or a specialist, does NOT mean you must bow down like he is the "Lord" himself and rush off without questioning the reasons behind what he or she is doing. You, as the patient, have MANY rights. First of all, you have the right to be treated as an intelligent human, with either symptoms you are concerned about, or a chronic illness or pain that you are there to follow up on. You have all the rights that are in the "Patients Bill of Rights" to ask every question you wish. If it is about a medication, and you feel it may not for one reason or the other be something you need to take, then question why that drug is important. If there are tests to be done that your medical professional is "suggesting", whether lab work, nerve conduction studies, X-Rays, MRI's, CT Scans, and many others, you have the absolute freedom to ask why that particular test is being performed. What will it help to either show, if anything is wrong, and if you have recently been through the "exact same" type of test within a few months of one another, then you SHOULD be asking them what is the importance of doing a procedure you just did a few months back.

It stands as a well known fact these days, that "specialists" all too often want to have "their own" procedures, testing, labs done. Even though another physician may have just done all of the exact things a month or two ago, there is this "code" some doctors have that rather than look at whats already just been done, and work from there, it seems another "new" set of tests performed by their "preference" of labs, techs, and so on may be able to do it better; more efficiently, or possibly the others missed something when they did the test a month ago. I can almost guarantee under most circumstances there will be nothing different. Unless you have some type of health issue, such as cancer, or blood clots, or some other very fast moving type of medical problem, those tests that were performed a month or three months ago, will be the same. 
Tried and true this happens for a couple of reasons. First of all, doctors, especially "Specialist" tend to be arrogant, and feel they do the "best" surgery, best diagnosing; they are "best" at everything. So, never would someone that highly educated and knowledgeable take the word from another physician or whomever did their testing. Or it is something much more tangible than their ego. It is their "hip-pockets." Doctors, especially those in very highly specialized fields DO get "perks" from certain labs, MRI companies, certain pharmaceutical companies, from those highly regarded business that make medical equipment, such as pain pumps, knee and joint prostheses, and others. 

Now the first things that may jump into your head is that physicians cannot take "bribes", or money from "any" business such as that. Plus, they are not supposed to "favor" one company over the other when it comes to medications, medical equipment, and so on. Yet, how many times have you set in your physicians office, and the pharmaceutical representatives are there. Either they get to go back while you are sitting there waiting on your own appointment. Or they drop off "goodies", possibly even samples of medications. I know for a fact one of my Orthopedic Surgeons was taken out to dinners, or given other items of use, because he was using their prosthesis, over another company's. Now, it is NOT against a code of moral ethics for a physician to go out and dine with these representatives, or get pens, pencils, all kinds of office supplies from them, and accept certain types of goodies brought in for holidays and so on. But, of course it is certainly illegal on a moral, ethical, and the law side of money to change hands or preferential treatment from entities such as these. Then again, sometimes you have to wonder where some doctors get the money to drive very expensive vehicles, unless they are like the so-called "Opthamological Surgeon Specialist" that turned out to be the biggest ass, and the outstanding "quack" I've ever had the chance to see. NEVER, and I mean NEVER will I, or anyone I can convince NOT to see this so called eye specialist. He was as far as I'm concerned gone out of his mind. All the while he was raking in the money. When you can have an office of more than 50 personnel, and your "office" takes up an entire floor in an office building in Dallas, plus the staff was almost choreographed to play their roles in what seemed more like a "movie production" than a specialists office, you had better turn, run and never look back. 

So, all that said, I feel this movie and I hope more to come in the near future will truly bring out the very "real" challenges patients chronically ill and/or with chronic pain go through to get the help they need. For the most part, I know speaking for myself, I am flying by the "seat of my pants" when it comes to new symptoms that concern me, which physician should I go to for a particular new symptom, or should I first do enough of my own research to help speed up the process of me feeling better. Changes are fairly good, that I am better off trying to research my own symptoms, changes, differences that I'm experiencing BEFORE traipsing down to my doctors office. For one, I feel if I don't go well prepared, with a list of symptoms, and some information about what research I've done to possibly explain what is happening; I wind up not getting my "dime's worth" into my physician, he mumbles a few sentences, listens to my heart and lungs, and then off into the wild blue yonder he flies out, leaving me more confused than when I came in, with some "new" medication that is probably not going to be helpful, and I am as just in the dark as before, but worse. Again I've had my physician NOT listen, NOT hear, and NOT diagnose my problem. I go home upset, mad, and ready to rip someone's head off (not literally), because I feel cheated by the medical system again. 

I happen to be fortunate enough for the moment, because it can change in any given time frame of having a Primary Care Physician (PCP) that is young enough, extremely intelligent enough, and likes the fact that I DO research first, then bring what I feel maybe useful to him in order to find out what is going on with me. So, he LIKES informed patients. My Rheumatologist is definitely the same, if not more so. He LOVES the fact I have done research on medications, on the RA, paid attention and written notes about my symptoms, and come in as well informed patient, that can understand exactly what he is suggesting. Often times when I bring something in, say about new medications. More times that not will he be on the same page as I am. I leave there with what I felt might be the answer. And he seems grateful to have a patient willing to keep tract and give him as much information as I can. It is a win-win situation for both physician and patient. 

So, as I close this "chapter" even though I have only seem the "trailers" of Cake so far, I believe it is a giant step forward in the progress of educating everyone about chronic pain and chronic illnesses. It is a look into the human soul and just what a toll these illnesses take on us. My hopes are this movie will open the doors in Hollywood and be the start of something much bigger. If this film and others that could follow can help to educate all of us, to understand that something "chronic" means just that. It is "here" to stay, each moment, each minute, each hour, day, year and beyond with us. So, those that live with these many costly illnesses, the toll it takes on making some of us no longer able to do our jobs, take care of families, have our own "normalcy" of like back, and the cost on our nation alone in medical bills and lost wages. "Chronic Pain" all too often completely destroys the quality of life for the patient, spouses, and families, causing divorces, and destroys what many of us have built our life upon. 

My hopes are that you also will see the movie, and respond to it. We should let it be known that this should be the start of a much larger look into more and more "true to life" film portraying a life "taken" over by pain and suffering. 

 p.s. by the way the CEO of the Arthritis Foundation has endorsed this film and has told her feelings about it depicting all that patients deal with.
 

Having A Life of Chronic Pain & Living It is no "Piece of Cake" - not even in the movie...

After watching the trailer of this movie, reading about it, hearing what Jennifer Aniston said about it in her own words, then to see that Ann Palmer the President and CEO of the Arthritis Foundation is not just endorsing the movie, she actually attended a "preliminary get together" about the film with Jennifer Aniston, Stacey Courtney, the stunt coordinator in the movie, that took place in LA, when the limited screening of the Film came out on Jan 6th. Aniston talked about things she prepared herself for in order to make the movie, which included gaining a bit of weight, not exercising and going without makeup in order to "get into" the character role. Stacey, that was like a mentor to Jennifer had also been in an accident that left her with chronic pain, so she was able to help the movie portray a great deal of the "real" life of those of us dealing with chronic illnesses, diseases, and chronic pain....

Here is the URL to the information about the movie, which is presented on the AF website:  http://www.arthritis.org/cake/

I feel that this movie, will move many of us into tears... for "we" are going to know the all too familiar events that take place. I've heard she fits the part very well, and through herself into the character, by doing things or not doing things, that we also totally understand. Many of us find there is not enough energy or spoons, of whatever you use to talk about the amount of energy you have for any one given day... most of the time doing makeup and hair... get left off the days events because we know if we do some of that, the energy we need for other errands, doctors appointments, groceries... or going out with our friends and family. I am truly anxious to see this, and now after Ms. Palmer from the AF is also announcing it on the AF site, I found it even more intriguing.

I believe the public opening is officially around January 28th or so... I just hope it does portray a very detailed and accurate view to others, caretakers, family, friends, and even strangers as to why we truly in our everyday lives live with. You can explain and explain, yet at times unless that person is also not able to understand all of the rawness, the vunerable ways we all too often feel when the pain beats us down so much, that it is difficult to think about another day of feeling like you do. It seems EVEN WITH the PAIN PUMP, the "breakthrough pain medications", muscle relaxers and everything else we ingest, or do, from exercise, to aromatherapy... to going to the Chiropracter, to acupuncture... creams, salves, lotions, you name it to find some kind of relief from the moment to moment night mare of ongoing pain.

                                      

http://www.arthritis.org/about-us/news-and-updates/cake-a-painful-slice-of-life.php

PLACES I FOLLOW IN MY TWITTER - "Twitter" Hashtags...

As our "methods" of finding information online, or passing information around online continue to evolve, it is sometimes almost impossible to keep up with what everything means... we now have "twitter", and also "hashtags", we have Facebook groups, pages... we have Pinterest, blogs, Linkedin, we can "follow" some page, group, non-profit, we can be volunteers, Advocates, Activists, Ambassadors, we can be the ones ill with chronic pain, chronic illnesses, and the thousands of online sites you can get to for information about everything from doctors, medications, Pharmaceutical Companies, we can find kin folks, friends, classmates, ancestors, family trees, online books, online instructions... we can order online & get things in email, or by "snail mail", or pay bills online and have it in "real time" post to our accounts.

Our "daily" online world changes what seems like every moment. If something happens in a country thousands of miles away, we can know it in an instant. We can save hundreds of thousands of lives in knowing about large storms, violent eruptions, medical history in the making, watch surgeries online, watch directions of how to online, see our friends and family online, talk to everyone online.





I find I have a difficult time keeping up with exactly what some of our newest "ideas" mean. About the time I "almost" figured out Twitter, and hashtags, then this new "hashtags" main came out, and I am trying to figure out the proper way to use them. It seems they can be an "instant link" to every "search term", site, Facebook page, everyone on Twitter... technology in the making when you breathe in and out, something new has happened. So, I am "listing" some hashtags that you might find useful in a general sense of your searching for different things.

I will add to this list as I go along. In fact I may put this into a different "page" so it will be on top and available for you....

           
#AARDA

#Chronicpain

#sjogrens

#partD

#RA

Medicare Advantage Plans, Medicare, Supplements, & Health Insurance

I realize many of us are probably on disability of some kind. Those of us that have been chronically ill, for way too many years, have finally had to "give up" some awesome jobs, to get only a "fraction" of the benefits and salaries we once had.

Yet, chronic illness, whether autoimmune, CFS, FM or many other diseases, syndromes and illnesses, brought many of us to the place of decision... to give up a job and go on disability.

Well, in some states and TX is ONE of them, if you are UNDER the age of 62 I believe it is, and you have Medicare, they would not allow you to just purchase a "Medicare" Supplement. You HAVE TO get a Medicare Advantage Plan. Of which, there are not be a very few of these types of plans. With the "hatching" of Obama's health care plans, most of which Congress, as I understand it, you WILL BE able to purchase a "Medicare Supplement" if you so choose. The point of that is though, they are MORE EXPENSIVE than getting into a Medicare Advantage Plan. Some of the Advantage Plans do not even charge ANY Premiums. But, there are some doctors who may not take them, or you may have to get some PA's (Pre-authorizations) by your physician on certain items, or possibly you may have a medication, that may require "step therapy", where you try certain meds first before you go to one the doctor recommends for you. Although all of that is going on, I do know several bills have already went through Congress to change those issues.

Well, I've had Humana - their Medicare Advantage Plan now for about 5 years and for the first several years I was quite satisfied. Them seemed to have been over the past 3 years getting slower and slower to process claims, making doctors wait to get paid, which of course is going over about like a lead balloon. So, like my own PCP, who had now decided as of Jan 2015 to STOP taking my Humana Plan! Well, this is the doctor WHO FIRST DIAGNOSED MY LUPUS! Plus he is the one who takes care of my Lupus, taking care of my flares, and medications. Even though we have been with him from almost Day 1 he was my physician, and I am trying to get him "Grandfather" me in due to the Lupus situation. Which I know can be done, especially due to the Lupus, because they did it with another physician for me on my pain doctor, who takes care of my pump.

But, when I started checking around, I've found out that I maybe doing a smart thing by changing over to the AARP "Sponsored" United Heathcare Medicare Advantage Plan. AFter researching it over about 3 hours yesterday,  I began to see more benefits ALL of my doctors take the Plan, all of my medications are in their database, and say that they take them... it does not cost the 49.00 a month, plus they give you some basic dental and eye coverage and for something like 30.00 or a little more you can get premium dental coverage.... anyway, if any of you have the plan, I would love to hear from you.

I shall post more tomorrow... I am worn out for some odd reason...

So, I think I may join my two pups and my husband on the sofa to watch the rest of the ballgame that is on

(A bit more from Facebook)

Well, if any of your have a Medicare Advantage Plan, and want to share how you feel, please I would love to know. I right now have Humana Gold Choice, and I have found out that MORE of my doctors and my medications will be covered under "United Healthcare Medicare Advantage Plan" for 2015. I spent a couple of hours yesterday checking all of my doctors and my medications through the site, and doctors that are going to "DROP" the Humana MAP in 2015 ARE going to continue with United Healthcare HMO Medicare Advantage Plan... I used to be extremely concerned about "HMO's" when they first appeared on the Horizon. They have a very bad rap to the entire insurance industry as far as health wise. But, now with the Medicare Advantage Plans more doctors in my area and my own personal doctors are covered... where they as I said as dropping Humana. Even the specialist that did my neck and reverse shoulder replacement take the United Healthcare plan, and he had dropped Humana over a year ago, and if I needed to see him I would have had to pay something like 30% or maybe even 40% of the visit charges!!!! So, if any of you have an opinion... likes, dislikes and so forth PLEASE either share here, or message me if you wish, or even email me at redstangblonde@yahoo.com or rhia@ravishingrhia.com.... I am thinking about changing both myself and my Mom over to this other one. AND to BOOT Nationwide UPPED my insurance and I just got through getting a new quote, which is over 500.00!!!!! a YEAR cheaper that who I have now... I am so pissed.. they PROMISED ME when I had to get the new car, my monthly premium would only be about 15-20 a month higher... BULL they almost DOUBLED their premium!!! I also found out that since Jim is NOT able to drive at all, and may not be able to for a long, long time if ever. So I DO NOT have to keep him on my policy for now, until he can drive again. Talk about a bunch of money hungry greedy asses... pardon my French! You have to watch your back, front and sides, because they will "stab" you any way they can.... corporate GREED!!!!