Showing posts with label Creaky Joints. Show all posts
Showing posts with label Creaky Joints. Show all posts

Friday, July 21, 2017

The 50-State Network Health Advocacy, Creaky Joints, The Global Healthy Living Foundation and "Patient Counsil" that are at the heart of these Arthritic Illnesses & "Chronic Pain" Foundations



I've been a "member" and follower of "Creaky Joints", and "Arthritis Power" plus following Seth Ginsberg for a very long time. He began his venture of these websites, due to his own struggle with pain and arthritic illness that began very early in his life.

I've always admired his tenacity, and the way he gives each of us, the patients a "VOICE' about our own Pain problems and Arthritis health problems, and there are many. I can definitely attest to the MANY types of Chronic Pain, that myself and MANY of us have to try and deal with daily. Which includes trying to get to the proper doctors, get the medications we need, get insurance to pay for the help we need, all the while also fighting "Congress" on the Federal and State Levels, so we can continue to get the "Best Healthcare" for "Chronic Pain" possible. I believe that many people that have not experienced health conditions such as Rheumatoid Arthritis, Osteoarthritis, Juvenile RA, along with several other "arthritic" conditions, don't get the "horrid" pain all too often patients live with. Of course, pain, is not the only factor that effects every part of ones life. We often live with stiffness, joint swelling, mobility issues, medications that cause some "harmful" effects, such as corticosteroids. Like my PCP says to me, Prednisone is a "necessary evil" for me. Yet, I already was predestined to have osteoporosis, thus with my body frame being small, the medications, along with RA and Lupus, have me at the "severe" range of osteoporosis. This simply means, THAT is more than likely why my hip fractured after the fall I took in December last year. If I had not had osteoporosis, I may have came out with just a very bruised thigh and hip. Yet, it was fractured in two places. Also, those of us with this dreadful disease also run the risk of "not enough bone" to have surgery on. I have ran into that one with my neck. After this 2nd surgery, now I face "not enough vertebral bone" to even "repair" anymore. So, this 3 level surgery I had in April HAS TO WORK, as my Orthopedic Surgeon put it. If not, then I run the high chance of having a "totally fused" neck, where I could not look UP or down... or move my head very much side to side.

I had a very informative "phone conversation" with several of the people from the  50 State Network and the Patient Counsel all a spin off by Seth, as well as The Global Healthy Living Foundation this afternoon. I feel very privileged to be a part of these foundations. I hope to help further educate patients, doctors, find ways to get bills passed at the State and Federal Levels of government, along with other ways in which they help patients, there families, and close friends and help to pave the way for more guidelines on several extremely important topics that effect many of us, from "biosimilars", to "all ways" that patients are effected by health insurance or lack of, medications, finding doctors that can help, and ways to cope with the red tape involved when you are chronically ill,

Most that know me, know my own personal journey through the pitfalls, the times of doubt and sorrow, and the sometimes triumphs over these diseases. All too often patients like myself, have "several" pain problems, not just one. Which makes our life a living hell at times. We fight for treatments, medications, insurance that pays, along with every step we take. When you are chronically ill and/or in pain, it's difficult enough just to get out the bed each morning, much less take the stresses of finding proper care, proper medications, trying to get insurance to pay, and now fighting the government so we continue to be able to get the care we need on ALL LEVELS.

The 50-State Network Patient Network, along with Creaky Joints, and The Global Healthy Living Foundation are helping to get our governmental bodies "on board".  I am also now a member of the "Patient Counsil", and will update you more as I move forward in my own venture and learning about everything. They provide a great deal of information for patients, as well as those who are playing other "active roles" in these foundations Rather that taking away what we need to survive and try to thrive through all of the days of outrageous pain, we are out there fighting for not just ourselves but ALL CHRONIC PAIN PATIENTS, LOVED ONES, FAMILY, JOBS AND MORE!

I am hoping to become more active in a role with the 50-State Network, already involved in Creaky Joints, and to learn more about the Global Healthy Living Foundation. As the days go by and I learn more, I will definitely keep you posted, on how you can contribute. In the meantime, all of the links are below, so YOU can go to the sites an find out more also.

By the way when I was reading through the documentation from "Creaky Joints" one "phrase" really stuck out to me. Of course much of it is brilliant and so helpful to patients, caretakers, families and close friends. We've all heard the phrase "Do No Harm" which is of course the main "vow" of physicians. One of the things they pointed out though was that does not "just mean" physical harm, but mental and even "financial". I felt that really "struck" a nerve with me. With the very high cost of surgeries, and the ones I've had are always over the $100,000.00 dollar range... yet, unless you really "ask" for help, either for a payment plan, or "financial aid" of some type, often you are NOT offered it. I've found out there is NO SHAME in calling a health care provider, especially with a huge "bill" from surgery etc. and asking for some type of help. Often if you "pay it all" at once, they will give you a percentage off the bill, or like myself, on this "Bone Stimulator" that I was not told runs $5,000.00 AND ONLY LASTS ABOUT 6 MONTHS, and is NOT reusable for future surgeries. So, my part was going to be over $600.00, and that is just a "drop" in the bucket of bills, from hospitals, doctors, the Ambulance, ER, Anesthesiologists, Radiology, and so forth. I called and found out that I "qualified" for complete "assistance" for the entire 600.00. Yet, if I had not "asked" they never would have "offered" for sure. Just on portion of what we deal with on so many levels, with any chronic illness. 

Also, those of you who deal with the stresses of "Arthritic" illnesses may want to check out the app "Arthritis Power". The details are at the URL listed below... and you can also get it at the "App" Store at Apple.com or on Google Play.


Please visit the sites, and see just how incredible these places are along with seeing how YOU the PATIENT can be on board also, to fight the "good fight" for all!

https://creakyjoints.org/


https://www.ghlf.org/


https://www.50statenetwork.org/

 

https://arthritispower.org

 


Friday, June 9, 2017

Delving Into "hopefully" a New Outlook on Rheumatic Illnesses & finding Ways to get the word out to Others... Possibly a New BOOK, A new "Non-Profit" to be active with, and a "new attitude" for myself "Relationships" Chronic Illnesses, and Life



I've been basically "drowning" in my own sea of dispare over the past several months. TODAY being the 1 year anniversary of my Mom passing away, of course makes things even a bit more "difficult" to hold my head up and move forward.

I have a close relative that talks often about "being lonely" and is alone. In other words right now there is no "one significant" other, and I totally relate. My situation is much the same. The only "significant" other for me, is Peanut, my "Holi-Terrier"... as I call him! :)

So, I get the times that you wished there was someone there to talk to, to go to the market with, to go out and grab a bite to eat with, someone to be with you when you go through tough surgeries, or doctor's appointments... and just basically someone to "share" life's up's and down's come what may.

After my last "breakup" I told myself, I would NEVER "commit" again. I feel as if there are basically "3 strikes" against me as far as very long-term relationships, and for me, that means I am just not cut out for the "relationship" thing anymore. Possibly I was NEVER cut out for it, but I was damned and hell, that I would NOT give up! Thus my 3rd one, I thought was for "infinity". Well, NOTHING here on this Earth is for Infinity! One way or the other ALL whatever it be shall come to an end.

I've given much thought to either venturing out on my own, to a club, and I tried the church situation for awhile, and I need to get back to going. After I had all of the problems with Mom, then me and my own surgeries and so forth, I just had to stop going for awhile, until I was well. Furthermore, I really feel badly stating this, but although I was a "new member".... not ONE PERSON ever even bothered to check on me, or see why I suddenly stopped coming. This is after I had "joined" the church. Frankly, since I was actually ill, and had surgery etc. it really hurt my feelings that not one soul bothered to check on me. Besides, I (and maybe it was just my own stuff) but felt like my "tidings" were not "enough" weekly. Yet, I was giving what I felt the Lord asked me to, and also being with only my income which is very low, it was as much as I could give at that time.

Anyway, not to get too deep into religion, but it left a bad taste in my mouth. Yet, I will go back, it maybe that I go to another church, and not back to that one.


I have long been a follower of "Creaky Joints" a Non-Profit started by Seth Ginsberg who himself developed a Rheumatic Illness in his 20's. Like many of us, he found there was just not enough information out there for patients and caretakers. Actually in many ways there was not a great deal of information back just a few years ago for the medical profession. I was shocked to find out how many nurses, and even Physicians knew little about some of the autoimmune illnesses, and many tied into RA, Lupus... things like Sjogren's, Raynaud's, and MANY other AI illnesses that are "joint related" yet also effect other parts of the body.

At times I felt as if I was "educating" my own doctor. So, Seth opened his mind, his heart, and his talents to begin "Creaky Joints", which recently began a new program and app actually called "Arthritis Power". I just recently got it to download on my phone, and I have it open on my computer.

As I begin the "journey" through it, I hope not only does it help me, but it gives me the
"heart" to once again write on my book, and get myself advocacy back on tract. After the ordeal with my Mom in 2016, and then her passing away only 6 months after showing signs of "Lewy Body Dementia", it was quite a shock for me, and my family, friends of the family and other family members.

So, rather than ponder this "lonely" phase in my life, after talking with a wonderful woman on the phone earlier this week, that is a part of "Arthritis Power" I was inspired to try and give myself a break, and find that "voice" that can take me wherever I want to go, whether writing, blogging, being more involved in the advocacy, activism, and Ambassadorship roles that I so love being a part of.

So, here below are a couple of links. You can go to these and find out more information about "Arthritis Power" and "Creaky Joints".....

https://creakyjoints.org/
https://arthritispower.creakyjoints.org/
http://www.pcori.org/

Patient-Centered Outcomes Research Institute

https://www.uabmedicine.org/

University of Alabama At Birmingham



"PCORI" and "UAB" both sponsors of "Arthritis Power"




Tuesday, May 16, 2017

World Autoimmune/Autoinflammatory Arthritis Day

 In one week we'll be putting the AUTO in AUTOimmune & AUTOinflammatory Arthritis by hosting a virtual awareness race via Facebook & Twitter - and YOU need to help "drive" the awareness!

Learn more at www.WAAD17.org - and invite others (SHARE!)
— with American Autoimmune Related Diseases Association (AARDA), CreakyJoints and International Foundation for Autoimmune & Autoinflammatory Arthritis.
Take a look at the website, and Facebook page! YOU can find out more at both of those.

It's time to take Autoimmune Arthritic Illnesses, and "run" them off the track! 

 


 

Monday, November 9, 2015

"ACR15" (American College of Rheumatology) conference 2015 in San Franscisco!

Since I've been away for a couple of days, I didn't get a chance to post about the ACR15 Conference! From the looks of it, they had an incredible turn out. Lots of non-profits like Creaky Joints, the IFAA, the Lupus Foundation and so many more.

Plus The Rheumatology Research Foundation is celebrating their 30th Anniversary this year and launched a brand new website for it! So, there are lots of great things, events, and research, plus more awards and so forth going out for all of the incredible work done by so many, when it comes to the realms of RA, Lupus, and so many, many more diseases.

An Article About the High Cost of Medications for Conditions such as RA, and how frustrating it is for the Doctors also...

http://www.wvgazettemail.com/article/20151017/GZ04/151019600/1455



New Website for their 30th YEAR - American College of Rheumatology!

http://www.rheumatology.org/Advocacy






Tuesday, September 15, 2015

When You are Unable to be somewhere, participate in events, whether family, friends and your activist, advocacy things... the challenge is to NOT feel guilty or as if you are letting others down....

 

 

https://creakyjoints.org/blog/rsvp-blues-when-autoimmune-disease-keeps-you-home-saying-no-to-invites/#.Vfg6WntAzIU

 

A great article about just how we all too often feel - when we deal daily with Chronic Illnesses and/or Pain. The challenges of being able to be at events, be with family and friends... how we feel "guilty" for thinking we are letting others down... it is NOT our fault, yet, I know for myself, I feel guilty, frustrated and like everyone around me thinks I am just making this up and I am not all that sick... People in general see us outside the home, when we are "okay"... many do not witness those days, weeks, or even months that we are NOT okay....

 

Wednesday, April 22, 2015

"RA" is not a "serious" of a medical issue as before? Really!?

https://creakyjoints.org[mycred_affiliate_link]


The REALLY sad truth from this story, and from others, is that "some" people actually believe this. If we are not limping and carrying a cane, or in a wheelchair, have a walker or even go out in the public looking "half decent" with makeup on and your hair not a mess. The very first thing I hear is WOW, you must be better!" Better from When? Really? Better from when I was almost screaming in pain earlier today with my back and hips? From 2 weeks ago, when I just didn't feel well enough to "dress up with my makeup"? The other sad fact, and I know it to be true... if you are ill, in pain, especially chronic pain, and you are seeing your doctor, at times I have went in, maybe deciding not to look so horrible... so I do put a bit of color on my cheeks and a swipe or two of mascara... you can almost bet the doctor does NOT take you as seriously as they do when you walk, crawl, or come in looking like the "death has been warmed over".... not all of them, but I have seen it more times than not... so, especially if I am going in for something like chronic or new pain, bad enough I am willing to do just about anything to get rid of it.... I sure as heck don't go "looking" okay. I don't put makeup on (I don't usually feel like it anyway)... but I realized years ago, you as a whole may not be taken as being in that much pain, if you are not wincing and in tears.... also MEN are taken much more seriously, as a whole when they go into the doctors office, especially with pain, than women. We, as women have seen it, been there, done it, bought the shirt, jacket and book... Men have it much simpler. As a whole, they go in and tell their physician the issues at hand, and usually they will get the treatment they need. At times women must jump over hoops, and hope for the best. It is better than it used to be, but how many of us have been told... you are too emotional, you think about it too much, maybe it is hormones, are you stressed, maybe you just overdid lawn work, or have you been out and about shopping to much?? Those are just a few.... So, when this story came to me via email, I knew I needed to share it. I will also put this up on my blog..