Showing posts with label #arthritis foundation. Show all posts
Showing posts with label #arthritis foundation. Show all posts

Tuesday, October 23, 2018

My Latest Addition of my Newspaper! For Tuesday!

Tuesdays Addition of my Newspaper containing some great articles and information from the Arthritis Foundation and the College of Rheumatology and the Annual "CARRA" Conference!
College of Rheumatology

Annual Meeting of "CARRA"

Monday, November 28, 2016



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Tuesday, June 30, 2015

When "Radiology Reports" come in and say you had a "prior" laminectomy BUT you NEVER had LUMBAR Surgery~ - Really???

I have a VERY ODD Question for everyone.... Have you ever heard of someone having a test done on their lumbar spine, for instance as I did last Friday, AN when the Radiologist read and typed his his report, he says several times there appears to be "such and such" from a "PREVIOUS" laminectomy????? I have NEVER HAD LUMBAR spine surgery... NONE! So, was he SEEING something that could be "further damage" I have, that for some reason made him think I have had a laminectomy before? I've tried to think of a way to "google" the question, and just can't get it worded where I can find out why this might be. So, if anyone has ever heard of this. or knows anything about it, feel free to post. I GOT my reports from the discogram done on Friday. My Orthopedic surgeon has NOT gotten back to me, but the reports were already up on my personal "patient portal" this morning. So, I could sign in, see and print them. So, I already know what the tests say, but this business about him saying something several times about a "prior" laminectomy has thrown me for a loop....   ( can also be spelled laminotomy)  and can mean "partially removed" or "fully removed" depending on which was done... YET NEVER HAD I HAD THIS DONE???

More later.... but if anyone has an answer... or how to look this up so I can get an answer... feel free to post, post on my Facebook page, or send me an email... I am so curious as to "why" it "appears" I've had an operation on my "lumbar spine" when I never have....

I went ALL WEEK LONG, well since Monday KNOWING that my Orthopedic surgeon HAD the "discogram" results. I had "pulled" them myself on Monday afternoon, from my "patient portal" and printed both the discogram and the CT afterwards so I could read more about them.

FINALLY yesterday   REALLY??? I get a call from his office! (About time Huh)? So, of course he wants to "go over" the results with me... I can fairly well guess what that will entail. If what I am reading is how I interpret it, I am sure I will be going through at least a "1 LEVEL" "fix" between my L-5 and S-1 discs... so that maybe actually "2" not sure how they were looking at it.

Well, so happens Mom has an her appointment with Him next week also! So, I asked if there was anyway, they could fit me in either before or after her.... well some times things actually DO work out! Unless something changes he can see me right after seeing my Mom, on that same afternoon..... YES!!!!!!!! What a thrill... not of course getting to the results, for either of us, but at least NOT MAKING 2 TRIPS to thSAME DOCTOR in DALLAS in the same week!

I am still quite in a quandry about this "prior" lamenectomy thing. My suspicions are either since I had the CT back in early May, I believe, due to the osteoporosis, "something broke off" thus creating it to appear I had a "prior" removal of that part in my lumbar spine.... either than or the guy is a total nut!! Which also could be true!!! I'll keep you posted here and on FB... I appreciate as always the kindness I receive from so many of you.....

Fingers crossed that IF I DO have to have SURGERY, it will be more of a "micro" thing, without a huge ordeal of very invasive operating.... but time will tell......

More Great News from the AF and FDA - truly making headway!


Awesome News Once again from The Arthritis Foundation along with the FDA!

Friday, May 22, 2015

WOW!!!! Talk about OVERWHELMING!!!!!

I wanted to reach out to all of you that come and read on my blog. I realize that I was not getting it "out there" like I needed to.

Then between becoming a voice, advocate, an Ambassador, A Platinum Ambassador, Activist, and volunteer, I began to be able to have a better audience.

I have several to thank for this but I will say THANKS ALL OF YOU!!!

Right now I have had MORE page views than any other time of this blog... and I have had 335 so far today!!!!!! 

That is just totally mind boggling!!!

I am in support of a great deal of Organizations who are moving forward to make life different in good ways for so many chronically ill, chronic pain patients, autoimmune illnesses, arthritic illnesses... and I know being a "part" of those has helped me "round my field" of my "audience"....

I feel I should shout out to a few, but I hope I don't leave anyone out...

My heart felt thanks and more to...

The Arthritis Foundation

WEGO Health

Cure Click (a part of WEGO)

WEGO "Health Hero's"

International Autoimmune Arthritis Foundation

The Pain Foundation

The Sjogren's Foundation

The Lupus Foundation

Lupus Research Institute


Power of Pain Foundation

Alliance for Lupus Research

and the list goes on and on... I probably need to update the list on my blog right now.... to ALL of you... thank you for your believing in me, for listening when things really suck, for "celebrating the good things", for showing me new ways, and a new day when it comes to living with some of the horrid diseases and illnesses.... Without all of you, all of THIS would not be possible!!!

Friday, March 20, 2015

Excited, Thrilled, Disappointed, Upset, Mad At Autoimmune Illnesses, and sometimes just upset with life in general - Not able To go to The Arthritis Summit next week!

I've not said much to anyone about my current situation with the autoimmune illnesses, pain, the severity of pain, a headache now that just won't go away, and all of the stress these autoimmune illnesses have caused me over the past month.

I always know, for ANY of us, plans sometimes change within a day! When you have a chronic illness and/or chronic pain, every day can be a challenge! WE can have our "great days", our "good" days, our "okay" days... and honestly it seems more days that it is SUCKS! These illnesses completely destroy our lives as far as whatever normal is.

They take us by the hand, heart, body and soul, and sling us around to the 4 corners of the Earth. We never know if we will land standing up, or sliding down that damned steep hill, with the rocks, twigs, gravel, and all scarring if not our "bodies".... our minds for sure.

I realize that "autoimmune illnesses" are NOT the ONLY diseases that are chronic and hit us in a haphazard way of life. But, they tend to be really good about waiting until we have some awesome plans scheduled, then totally ripping them to shreds within a breath's space.

I've been fighting with what I have felt was a Lupus flare now for weeks. I've also come to the place I MUST get these bottom teeth, "implanted" and anchored down. It is way overdue, and it is causing me to have all kinds of stomach issues, since there is so much either I can't eat, or I can't chew properly, thus I either avoid those things, or try to eat them, and almost choke, or they go down half chewed which is horrid for my stomach.

So, I knew I was facing a possibility  of not being able to go to the Summit with AF next week, which SUCKS big time, since I am one that made a "Platinum Ambassador" and should be there to represent all of us that had that honor, and be there to do what I am supposed to and that is to get those in Congress, "educated", "on-board" "possibly involved in the Arthritis Caucus" and backing the Congress people that are in the Caucus.

Plus I feel it is also my duty to lay out the "agenda" for AF 2015, and the things we need and hope to accomplish, from the issues involving now our "state" representatives, more on the realms of the DOD and the role in arthritis for our men and women that come home and develop these illnesses, to getting research out there in a more advanced way, and to "teach" ALL, public, government, professionals, the medical world, caretakers, patients, ALL about how "arthritis is NOT ACCEPTABLE" for anyone to have to live with.

So, to NOT be able to carry out what I feel is my duty to do, has really put me in a tailspin of hurt, worry, and let down. I feel I've let down the AF, the Ambassadors, and let down everyone who has stood beside me all last year no matter what helping me to see, even though I felt I was not doing enough, I was doing plenty, even when I felt like I wasn't.

Now I have developed something as of day before yesterday, that came on very sudden and hit me like a brick wall. I am not sure if it is a bad flare, or what. But, between a headache that is the WORST HEADACHE I have ever had in my life, that will NOT GO strength is none, I do well to walk across the house, I am freezing one moment, burning up the next, and I am in extreme pain from my head to my toes.... I feel as if someone has beat the literal hell out of me with a baseball bat, then ran over me with a car a couple of times. From my thumbs, all the way to my head, and all the way to down my toes, I HURT! A very DEEP BONE ACHE, that is relentless! Plus I ran low grade fever all day yesterday, and this morning, I can tell my body is fighting the fever, because I feel so damned lousy... I am hot one moment, chilled the next, cold the next, sweating the next... and our very HIGH Humidity is NOT helping it at all.

Anyway, I honestly am not up to sitting here, so I will close this for now, and explain more over the next couple of days.

But, I DO INTEND on doing EVERYTHING I CAN FOR THE E-SUMMIT!, and posting to social media and so forth as the AF storms Capitol Hill on Monday and Tuesday! I wish all of them luck, and hope it turns out to be an incredibly awesome Summit!!! Go Get Um!!!! I will be there in spirit....

Thursday, March 12, 2015

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

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

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

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

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


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

Wednesday, March 4, 2015

YOUR VOICE on Capitol Hill at the "Virtual Summit" can be heard! YOU WILL BE HEARD! E-Advocacy and more for the Arthritis Foundation

Okay Guys and Gals!!! I am asking for YOUR Participation in this EXTREMELY IMPORTANT situation. As most of you probably know I have made "Platinum Ambassador" for the Arthritis Foundation for 2014-15. So, I am headed for Washington D.C. March 22, through March 24-25th... for the Annual "Summit on the Hill" by the AF. We will be going personally to Capitol Hill to both the Senate and House of Representatives, to meet with as many of them as we can. If we don't get to meet personally with them, we still usually meet with their "health legislative" assistants, and other staff that can help to deliver our information and message. It is IMPERATIVE THOUGH that ALL OF YOU that can't be there, really and truly KNOW YOUR VOICE COUNTS!!! I know many of us have become disenchanted with "Congress" - our Senators and Representatives for many reasons. Yet, I know PERSONALLY FOR a FACT that YOUR VOICE DOES MATTER!!! I have seen the results of what letters, phone calls, messages, and meetings can do for all of us in the matter of Arthritis, whether osteoarthritis, RA, Juvenile RA, Still's Disease PLUS ALL of our other "Autoimmune" and other health issues. BUT, WE need YOU to also raise your voice and be heard. We will be DELIVERING YOUR LETTERS PERSONALLY to the Senators and Representatives that you can follow from instructions below, and fill in your personal parts, tell your story also, or however you want to personalize it. The Arthritis Foundation NEEDS "Virtual SUMMIT people" and that is YOU. Even if you are going to DC, still please use this letter to be given to your Senators, and Representatives. ONE VOICE can MOVE MOUNTAINS! I have witnessed it, and continue to truly believe we do matter. BUT, if you DON'T contact them, then they do not know your situation and how YOU feel. So, I am posting here, on my blog, on my Pinterest, on my Instagram, on Twitter, everywhere I can about how to be a part of this critical movement! This is for ALL of us, with these horrible illnesses, that need help with getting good physicians, the MEDICATIONS WE NEED and making them AFFORDABLE FOR ALL! This is about those in our nation, many of our Armed Forces Come home with arthritis problems or develop them..... and many of our youngest of this nation are also patients, with Juvenile Arthritis. I want to urge each of you to take a bit of time and send your letters. I am including all of the instructions in an attachment and at the URL that is provided. If you have questions feel free to ask me, either through Facebook, or through message or email me. If you would like me to help or if you have a message you want me to take your letters with me, and I will make sure they get delivered. 

Here is your link to sign on to be an "E-Advocate" for the Arthritis Foundation. This gives you a voice via emails and so forth so you can be heard at the National Congressional Level. It is not time consuming, you don't even have to leave the house, but this is a way to be able to speak up and be heard by your Congressional Leaders that you voted in. Let them know how you feel, and what you feel is good for yourself and the nation when it comes to Arthritis, RA, Osteoarthritis, and ALL of the other diseases that are often in tandum with arthritic illnesses. It takes a few moments to sign up and be heard for the rest of your life by those who can help to make things better in the realms of your health.…/sign-up-to-be-an-e-advocate.php

Then this is how you can "attend" the Annual Summit on the Hill as a member of the "Virtual Summit"... this link provides you with a sample letter that you can also personalize, add your picture, and tell your story about your health issues when it comes to arthritis, whether a patient, caretaker, family member, or just want to be a "voice" to help others.


You can download the "letter" from that link, and all of the instructions are there so you can send it back via email to those that will be taking YOUR letters directly to Congress. WE are giving a VOICE to YOU, even if you can't attend... as I said, if you have questions, need help, or however I can assist you, feel free to email, message me, or post and I will be more than happy to help out in any way I can.

 ALSO!!! SOCIAL MEDIA is a HUGE way to get your messages across. MANY of our Congressional Members have Facebook pages, Twitter, Instagrams, and so forth. That is another way you can also make contact with them, so be sure to also look that up. I have both of my Senators and my Representatives Facebook pages, and I've sent Tweets to them and emails also from their websites. Sign up for their newsletters. That is a great way to find out how to contact them also.


Here you go!!! "Proof" is in the "pudding"!!! this study is compelling to show that a few "Tweets" or other type of Social Media use can capture your Leaders Attention on a Subject ...  

Tuesday, February 24, 2015

Reminders of How you, A loved One, Or Someone Else you Know maybe able to get assistance with medications & other needs for Arthritis

The Arthritis Foundation has really put their website in the spotlight and now includes LOTS of great information for patients, families, caretakers, and friends or advocates. From giving you places to get help with medications, names of medications, and financial aid that may help to play a huge role in a patients welfare especially when it comes to any type of Arthritis, Rheumatoid Arthritis, Juvenile Arthritis and so forth. I wanted to list a few of the URL pages with this information on them for those of you who may not know they exist. Rather than combing through the internet and searching for possible assistance, they really have put together some wonderful lists to help with these issues.

These are but a few of the pages from their site that can help in so many ways. Be sure to check out all of the different pages, information, how you can help yourself, a caretaker, family, friends, ... from medications, to healthy eating, exercising, doctors, tests, and more... this site really has a huge amount of great information for everyone.

Drug Specific Medical Care above - like help from Pharmaceutical companies.

Above can be actually getting the medications needed from the Pharmaceutical companies, or help with a high co-pay and so forth.

Above is another list of places that you may find financial aid for medications, or possibly to see doctors, and other types of assistance.

Above you will find some state agencies and/or local & even possibly Federal assistance for paying for your Medicare Part B and/or a reduction in the cost you pay for co-pays on prescriptions.

Above you can go to this URL and find the names and information on the medications themselves for arthritis and arthritis related illnesses.

Above is where you can find out about lab work you may have done, and what some of those tests are for, and what some of them might be in order to understand more about what the physicians are looking for when they do lab work.

Above this link takes you to where you can find out more on arthritis, symptoms, how it effects your other body parts, other illnesses that can often be related to arthritis, and how you can help to keep your own body more healthy. Lots of tips on the site for everything, from eating well, to the proper types of exercise, and how to do what you can to help yourself maintain a "quality of life".

Friday, January 23, 2015

Arthritis Foundation - 2015 Annual Summit on the Hill in Washingon D.C.!!!!

Registration is open for our annual advocacy summit! Join Arthritis Foundation staff & other advocates on Capitol Hill to meet with legislators & tell Congress that ignoring arthritis is unacceptable & more needs to be done for people with arthritis! Registration is free. Details here:


I am so TOTALLY THRILLED to be going back to Washington D.C. on March 24th through the 26th for the "Annual Summit on the Hill" - Time is already flying by so quickly. Thank Goodness I already have a pair of awesome boots to walk in... they are so comfortable and have a lower heel on them than my others! Plus I have a brand new longer jacket that should be very warm for the days there...LOL.. my luck, last year I felt I was not as well prepared for the cold, rainy, snow filled weather. So this year I made sure to try and be more prepared. I even had to buy another pair of gloves! I lost one of my green ones somewhere between the Capitol and the Hotel on our last day there. I loved those, but I have a new pair of red ones that are awesome also. Plus I am more aware of what to wear when, and the entire routine! This is going to be an astronomical year I feel in my bones for a headway forward into the places of lessening flares, possibly preventing flares, putting more of us into a remission, or help the spread of these diseases... I think as all of the leaders in the non-profit world of Arthritis, including RA and JRA, along with strides made in other autoimmune related illnesses, we shall see greatness.... I urge you to sign up to be an "e-advocate", because YOUR VOICE matters!!!! Hope to see you there!

Wednesday, January 14, 2015

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.....

Tuesday, December 23, 2014

The Arthritis Foundation and Our "Victory" from the 2014 Summit!

I am so elated to know my "voice" was in part what made the "Summit" on Capitol Hill a Success Story for Us as Patients, Caregivers and more, along with such an Amazing Success for the Arthritis Foundation!!!!!

It is with pride that I talk about my own personal story and share it through the Arthritis Foundation. I know in my heart they truly care about us as patients. I am so pleased to be able to help out. I am also so proud to be in a very "elite" group which is the "Platinum Ambassador's" for AF!!!!

Thursday, December 11, 2014

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....