The Arthritis Foundation - Becoming an "E-Advocate" and How YOUR VOICE DOES MATTER!!! YOU CAN make a DIFFERENCE!!!

As we begin a Brand New Year with New Congress Members of our 114th Congress officially now in. We want to further our cause on the issues surrounding Advocacy for Arthritis - Ra and Osteo, plus Juvenile Arthritis. I would love for you to joint MANY others around our nation in support by being an "E-Advocate" for the Arthritis Foundation. You never have to leave home, and your input can mean SO MUCH when it comes to legislation about health, from medications and the "tier" programs, to making Medicare sustainable, to giving out funding for so much needed research in order to give "a quality of life" back to the hundreds of thousands of women, men and children that suffer from these horrid diseases. I am including a link to the page where you can sign up and also read more about being an "E-Advocate". My emphasis on "YOU MAKING A DIFFERENCE" is critical. Because I used to think probably what you sometimes think "Oh, how can I, one voice make a difference?" Well, I can tell you from personal experience that YOUR VOICE can move mountains. Also, your members of Congress DO HEAR YOU! So, you helping to send your opinions and how you feel on health matters - does matter! I urge you and I know many of you have a "full time" plate, of family, children, jobs, and living, and also many of you are dealing like myself, with chronic illnesses like RA, Osteoarthritis, JRA and many other illnesses very much related to these... whether it be other Autoimmune Illnesses, such as Lupus, Sjogren's, MS, Myasthenia Gravis, MCTD and the hundreds more (I met a woman yesterday who is a lab tech and drew my blood for some lab work - finding out she also has an autoimmune illness - at 25 she suffers from Diabetes 1) ... so "we" are out there... and finding your "niche" where your voice can be heard is an incredible thing to do. I can say without any hesitation that my advocacy with AF, IFAA/IAAM, Lupus Foundation, WEGO Health, my "consumer reviewer" with the DOD I served as last year, my trip to D.C. with the A.F., my work I did with IFAA and all they continue to achieve is just almost mind boggling, my blog, my writing, my Facebook posts, as well as groups... and then illnesses such as FM/CFS/ME (that I continue to feel are all autoimmune related illnesses) .... and so much more... being a judge for WEGO Health Activist Awards, getting to tell my story on Capitol Hill last year and then again a couple of times in the year to my Congressional Representative and my Senators.... and now I would like to further my own Advocacy in my State... I feel it is crucial that we make headway in Texas on a State Level of our Government with these illnesses. It means getting our State Congress on board, and even down to our County and Town people in positions of government, all instrumental in making great things happen when it comes to health care, medications, research, and healing those who truly would love to have another "normal" day in their lives... most of us wished we could gain just a portion of our "quality of life back"... and that in itself would mean the moon and stars to so many of us... as patients, as caretakers, as family, friends and often even our medical providers. They would like to have more options to address our every growing and changing autoimmune illnesses, chronic pain patients, those of us that our joints just deteriorate and often there may not be a "good" explanation as to why... yet they would love to be able to know themselves and to be able to tell patients the "why's" and "how to" fix them. After the numerous surgeries I've been through, more than I can count on BOTH hands... I can say, that the thought of having to undergo another surgery honestly scares the hell out of me... even the idea of being ill enough that I may need to be hospitalized terrifies me. Each night I pray that I will NOT be ill, especially never again so ill, I must undergo a hospital stay. After knowing what I know, and then watching an hour documentary just yesterday, on just how many "Superbugs" there are just lingering around every nook and cranny of a hospital, it terrifies the hell out of me.... With an already very compromised immune system... with illness, and then even more compromised due to medications, the idea of going into the hospital already ill, and hoping I don't become even worse in there than before I went in... just puts me in a place of mortal terror. The last bout I had with double pneumonia, and had a fever so high for me at 103 degrees that I was literally hallucinating, could not type, could not walk straight, could not see... and if I had not finally figured out to check my temperature, at the time Jim was still in the hospital, so alone it really didn't dawn on me.... then seeing how high my temp was, and in so bad of shape I did not even trust myself to drive alone.... it really was yet another eye opening experience for me. I got by the "skin of my teeth" from being hospitalized. Because my temp was not going down initially even with Aspirin, Tylenol, and so forth... and having it in both lungs... I convinced the physician at the Urgent Care (he also is an ER doctor at our local hospital) and I knew him... to allow me to go home first, and see how I was in 24 hours with medications... he still was almost to the point of sending me via ambulance to the ER... but I swore to follow his rules, and if the fever got any higher, or I became more ill, I would immediately dial 911 and go to the ER... thus I avoided that one. But, here I am already a compromised immune system, Jim had then been in the hospital about 3 weeks out from the accident... he still was so out of it, he was not able to truly grasp the idea that I was so ill I could not at all come up to see him... and for a full 10 days, I stayed HOME, on the sofa, taking my meds and doing exactly as the doctor told me. The very last place in the world I needed to be was in the hospital myself. So, as I tell my own dilemma from 2014, my point is that STILL when I could even through the entire ordeal with Jim's accident, my own illnesses, then the whole situation with the Sjogren's and my teeth literally falling out weekly, then getting Jim home, to proper doctors, getting medications, finding how the hell to survive the ever growing costs of meds, doctors, since there is NOTHING to pay any of it but us.... to my own issues with all of the dental bills also NOT COVERED... and fighting (no pun intended) tooth and nail for Humana to freaking pay... IT WAS AN ILLNESS that TOTALED MY TEETH, not a "DENTAL" problem... and the vicious cycle and circle carries on. So MY FIGHT is the "good fight" for ALL of us... it is time to put the USA on the World MAP as being a "premier" nation that DOES FIND CURES or WAYS TO PUT THESE HORRENDOUS ILLNESSES INTO REMISSION... to stop the damage they cause.... and we NEED YOU... and your voice also.....

http://www.arthritis.org/advocate/join-the-movement/sign-up-to-be-an-e-advocate.php#

Advocacy Summit | Arthritis Foundation

I have already put this in my blog! But wanted to post again... This is such a huge honor and privilege and I am so psyched!!!!

Advocacy Summit | Arthritis Foundation

And then "the Juvenile Arthritis Camp" for 2015 -

http://www.kidsgetarthritistoo.org/meet-other-families/2015-juvenile-arthritis-conference/2015-ja-conference.php

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

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.                                                               

Old Enough to be a "Grandparent or maybe even a Great Grand Parent" and having babies??? PLease someone explain!?

Okay, maybe this is just me, but, I was reading an article out of my AARP magazine and it was talking about women OVER the AGE of 50!, I am talking about one woman who is 60 years old... having KIDS!!! They are waiting until they have made a half century here on the planet, then go in, have IVF and not only have 1 child, but often have TWINS!!!! Now, I do know my Dad was the "baby" of the family. He had 9 older brothers and sisters, some of them half brothers and sisters, and his Mom had him fairly late in her life. I am thinking she may have been in her 50's. Back then, in the 1st place, my Dad's father, outlived two wives. The 3rd one also was a widow, and had lost her husband, and her and my Grandfather had been friends when they were very young. My Grandfather left Tennessee, was here in TX, and lost two wives. Somehow he went back to Tennessee for a visit or something, and met up with this lady, that he had known back in their teens and 20's... She also was a widow... and had lost her husband. So, when Dad was born, his Mom was already well into her 50's early I would say, and my Grandfather was over 60.

My Dad and a couple of his brothers came along after the both of them had other kids by other marriages, so they were spread apart somewhat as far as age.

But, in the days to read that a woman decides either she wants a kid, gets married, and then discover they want a baby!!!!!! At 55, 60 years old??? Are you kidding me???

I am continually telling my daughter who is now 30 herself that newborns are for the younger generation. Most people over 50 years old, first of all may not have the health needed, or could have severe complications during birth, for the baby or Mom, or both. There are just so many things to take into consideration... and then the nights of no sleep, or very little, babies with colic, and my nerves are already grated down to a very fine thin line, how the heck does a woman in their
50 years plus have enough of anything to make a little child have a great life...


I know there are exceptions to every rule. And there are some women that are up in age, that could conceivably be able to carry a child full term, no complications, and delivery a healthy baby. But, think about the years a woman has been through and all of the changes that our body's go through. From the time we are very young, hormones begin to evolve and we step from one phase of our lives into another one it seems with each decade. In our teen's we are almost too young for having children. Then in our 20's through about 32 or so, most likely is the time our own bodies can take the carrying of a baby, the delivery, and all of the changes we go through after delivery. It is not an easy task for any woman, no matter what age, plus no matter how well and easy the pregnancy goes. It still takes its toll on us, physically, mentally, emotionally, and energy wise. Then we live usually for at least the first 15 years of that child's life in an emotional "thunderstorm" of worry, resolve, hoping, praying, and trying to keep our kids safe, happy and healthy. Even after they are graduated from High School, and either make their way out to spread their wings and soar to A and M like some of my friends in high school were very fortunate that they did get grants, to help along with college tuition and so forth. Even when our kids leave home, marry, go to work, and have their own kids, it is just more like we are continuing to "walk them through" the years of their lives...
Thus the notion that I felt lousy for one reason or the other, and I went into a doctor at 45 or more years old, and he told me I was expecting... I would either faint, kick his butt, or kick my own... or tell him it had to be an Immaculate Conception  HAHAHAHAHA.... as for myself, I had my tubes burned, severed. separated and all the "works" at 35 taken out to a more than partial hysterectomy. I did not want to take any chances on birth control failure when I had two kids, a boy and a girl... already fairly well grown, and headed out of their own.
The very last thing I ever wanted to even imagine was something go "south" and find out I was expecting...

Needless to say, I didn't know whether to laugh, cry, both, run screaming, or tell someone at AARP those women needed a good look at the funny farm... because they had lost their minds.... ;)

By the way, there is a new thing AARP... if you are a member, and enjoy the perks... I know one of mine is being hooked into Walgreens. I do get a great deal extra points at times, there are other things like discounts and so forth it provides. Now the latest thing they have on their site, is where you can do these small "trivial" games. Some of them are quite entertaining, plus I learned some things I didn't know. So, I appreciated that little factoid.

So, go to the main AARP website, and on the front page there will be a link to it. I have already about 6,000 or more points accumulated.. you can use them for discounts on trips, eating out, gift cards, flowers, shopping, motels, and so on.


I will warn you they are a it "addicting".... I started off with a couple of them, then found myself wanting to learn more, so I was playing more of those than I intended to....

An Article About Chronic Pain - How Horrible weather can be on those with chronic pain, joint problems, and chronic illnesses that effect joints, bones, and more

Great Article about "chronic pain" especially joint pain and the weather. I know for myself, that like yesterday, the very sudden huge drop in temp - from about 50 to 18 degrees yesterday a.m. sent me into one of the worst days of my life with pain. Ironically we were going to my pain doctor, BUT he was seeing Jim yesterday, not me. I wanted so badly to tell him that I could sit in the floor and scream, I hurt so badly, but I knew the appointment was not "about me", thus he knew by looking at me I was hurting... anyway, I had a headache that is one of the worst I've ever had even from years back with my migraines, and NOTHING would stop it. Believe me I tried everything I could think of. Then my neck was so stiff I could literally NOT turn my head to see over my shoulders while driving. I had to turn my whole body and use mirror. Then my lower back hurt so much, I honestly thought I had kidney stones. And my legs, ankles, feet, wrists, and my thumbs were so terribly bad, I felt they were stiff, and just was not able to move them without horrid pain. Now, the weather I KNOW "in my bones" (no pun intended) has effected me for years and years. Even when I would have migraines in my 20's and 30's the dramatic weather change could bring them on almost every time. No one quite believed me, and then when I began to see my Orthopedic Surgeon and he did all of the joint replacement and surgeries on me, he totally agreed the weather would absolutely effect pain, especially joint pain. Even the "phantom" knee pain I get with my knees, that seems like I never even had them replaced will come on with a vengeance when we experience storms and so forth. So, let not anyone make you think you are crazy, when your pain is worse in weather fluctuations. I think it is definitely so. Yesterday was living proof for me. But, I am also hurting today, so far not quite as badly as yesterday, but I can tell if i were to get up and really start moving around I would be in a world of hurt... which sucks. Because I have to get out today cold, bitter weather or not, and pick up scripts both of us have had filled. The visit with my pain doctor for Jim went well yesterday. Finally someone that will work with him. But of course this is ALL coming out of our pockets, and everyone knows office visits and medications are NOT cheap. I dread picking his up, and then this is my first time having anything filled since I had the new insurance start on the 1st. So, I hope the hell I don't have major issues with United Health and my MAP... I will be so pissed if I start having hell getting meds etc paid for. That is why I dreaded the change from Humana so much and just put it off the last two years. But, more and more of my physicians were dropping Humana, even my PCP, thus I decided to change over to United Health... is it a "Secure Horizons" AARP endorsed Medicare Advantage Plan. This one hopefully will not be too difficult, because I am already established and have been for years with all of my physicians. So, they assured me since I've been on the meds, and have been seeing these doctors for years things should go fairly smoothly with the transition. I will believe it, when I go today and try to pick up the scripts.....


Talking About "Good RX" card for prescriptions.... 

http://www.goodrx.com/

I can guarantee ALL of you that either do not have insurance for prescriptions, or need an extra amount off of your meds... I have used this twice for Jim's meds since we have NO coverage for him, and the meds even though "generic" are ALL expensive. There is no way we could pay full price on them. Well, I got hold of this URL and found "GoodRX" through a Google search. I can say that it is TOTALLY worth using. You can use it in just about any pharmacy... all of our local pharmacies take it and you get a better discount in some than others. But, you can look up all of the prices at different locations right on their website, so you know just about the cost before you even go to try and have them filled. We have well over 200.00 or possibly more in costs for 4 of his scripts and 3 of them came out to 69.00 rather than 150.00 or more. You can either just pull the coupons or copy of the card online and print it and they will also send you a regular card if you wish and request it. Unlike some of the ones that save you a bit here and there, this one truly so far has been a life saver for us. Between having to fork out the cash for a damned expensive pain doctor in which he has to go MONTHLY... and then medications that even in generic can be out of the bounds of reasons, I have been as pleased as it is possible to be pleased when having to spit out money you really don't have. But, there is not much choice... we either pay for it out of our pockets, or he just does not go, and does not have any meds either... so neither are very good - so you choose the lesser of the both evils, as my doctor has said about prednisone... I can either "take it" and it help with the horrid pain and symptoms of these autoimmune diseases and then know I will also have to contend with the crappy side effects, OR I can NOT take the prednisone and then suffer like hell... so it is the "lesser" of two evils.... anyway, this has been 2 days from mortal hell... actually all week dammit... Mom's phone is out and I've had to put in two work orders, then I took her a cell phone, that of course she has hell using... and I found the problem, it is an almost complete break in a line outside that is weather cracked, and worn almost through... and then they tried to do an "automated" call and ask if she was satisfied with the service... HELL what service???? They had not fixed a thing when I was there yesterday or today yet... anyway, then of course the weather sucks big time here... it is bitter COLD, and going to be several days along with the possibility of sleet etc... not a good thing for no driving idiots here... then Jim doctors appt and the meds thing... THEN I GO to MY pharmacy (this is after calling and emailing) them my new insurance information. Then I even TOOK THE CARD BY YESTERDAY! and they said they would "rerun" everything through. I go in today expecting issues for some reason and of course 3 SCRIPTS NOT RAN THROUGH THE NEW INSURANCE! SO, THEY are trying to collect 44.00!!! rather than 7.30!!! So, I had to wait for them to do what I had already told them about 4 times in the past 2 days! I get home and another script I had called in this morning, they STILL tried after I had been there TO RUN IT through the old insurance!!! OMG!!! I was livid.... and then I had to run errands, pick up stuff as far as for a couple of days just in case the weather gets really ugly.... and I ruined my entire day, almost yesterday and today... running around like a chicken with its head cut off with errands and crap. So, it got me off track with my writing and ALL I WANTED to accomplish over this past couple of days. I swear if anything tries to get in my way this weekend to keep me from doing WHAT I intend on doing, I am going to scream very loudly... plus since the weather changed I hurt so badly it is a scale WAY OVER 10!!! More like 17 .... everything on me hurts... I have actually thought that I was coming down with something else... the pain is unbearable even with my meds.... it sucks and now honestly, I am thinking the Orencia is NOT helping the RA at all... I hate to say that, but I think I am going to have to face the fact, that it may not be "the one" for me... and I hate that... the very last thing I want to do is try yet another biologic! Every time it is like starting all over again.... and it sucks... and many of you know that....