IFAA and the Walk for fundraising sponored by AARDA! To Help get a handle on Autoimmune Arthritic Illnesses!

I am not near any of the "walks". But, I wanted to show my support so I joined "virtually" the IFAA Team!

There are dozens of reasons why WE need as much support as possible when it comes to Autoimmune Arthritic Illnesses!

We need more research, more Rheumatologists, and Pediatric Rheumatologists also. We need better medications, hopefully someday with less side effects, and of course we desperately need to find a CURE! and/or STOP these horrid life altering, life stealing illnesses, diseases and syndromes well before they take over!

So, I invite you to walk, or walk virtually. Or give a donation, and you can "give" what you feel you can. Any amount is one more step for hope, help, research, medications, reasons why our immune systems go "haywire" and A cure.

I did not realize until this morning that the actress "Kelly Martin" whom I just happen to LOVE, is the National Autoimmune Walk Ambassador this year! Her sister who suffered symptoms for a long while and then was diagnosed with Lupus, that later took her at a young age gave Kelly a longing to try and stop these horrid illnesses.

I am an avid fan of Kelly's. In fact I record all of her movies on the "Hallmark Channels" and sometimes watch them more than once. I think she is a tremendous actress and an amazing woman.

Here is a link to the page where she has an open letter about her personal situation due to her sister's illness and why she supports AARDA and this walk:

http://www.autoimmunewalk.org/aawalk/ambassador.asp


Here is also a link to the IFAA walk Team Page!

IFAA Buttahflies

Here is my "personal page for the walk



http://www.autoimmunewalk.org/aawalk/participantpage.asp?fundid=1150&uid=5837&role=1

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....

 

Medtronic's Pain Pump Medtronic "2" has issues and needs to be "fixed" - Bothering me immensely this Pump has been a total Life Saver for Me!

 I've had the exact same pump in since 2010! In fact it will be 5 years next month, in October since I had it put in. I've never had any problems with the pump. I get it refilled about every 3 months, and it can always be adjusted, and has been a couple of times over the years. But, I can also "give myself an extra bolus" every 12 hours with the 1st "PTM" that came with this one. I was one of the 1st patients to get this particular one. I have a handheld device that after 12 hours, allows me to give myself an "extra" bolus of medication. I can hold the "Patient Treatment Manager" (I think that is what the PTM means) up to the top of the device and it sends a signal to it and if 12 hours have gone by, then it gives me a tiny extra dose, each time I do that, spread again over a 12 hour time frame!


I knew when the pump was put in, that after about 7 years or more, I will probably face having to have it replaced. The batteries can run out, but it can also be longer than 7 years also. Yet, when that time arrives I want to know I can get the same one implanted!


It has been one of the most positive changes in my life. I just don't know what I would do without it!










http://www.painnewsnetwork.org/stories/2015/4/27/fda-order-stops-production-of-medtronic-pain-pump#at_pco=smlrebh-1.0&at_si=55f813c00f886161&at_ab=per-3&at_pos=1&at_tot=4

Discovery Could Lead to Earlier RA Treatment — Pain News Network

Discovery Could Lead to Earlier RA Treatment — Pain News Network 

Sharing more great news in regard to hopefyully finding a way to detect RA and Osteoarthritis much sooner by other lab work!

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....