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....

Distressed, Disgusted, Distraught, Disturbed... AND MANY Other "Realms" of Distaste I Feel With Our Nation, Our News, Our World & All Who Choose to Bury Their Heads in the Sand...

If YOU are trying to figure out exactly "why" the name of this post is "OFF" from my usual, that is because IT IS, "Off the Beaten Path"...

You can say that this involves "physical", illness, pain, destruction, devastation and moreover, I am totally DISGUSTED with many of us, and I must say I include myself in that "us"....

ow the "news" can sit around and bring about MORE "crap" about "email servers, emails that are eons old, Trump and his debauchery,, along with each and every other "Nominee" - whether "Red" or "Blue" is beyond and above what I comprehend!!!

When just here in our own nation, we have thousands upon thousands of acres of precious land, homes, trees, earth, that first has suffered immeasurable damage from drought, and then to be completed brought down to its knees with wildfires above and beyond any one's imagination act as if it is just another day. W have "EVIL" doers on one of our main Highways through Arizona, SHOOTING arbitrarily at any and every thing they in their warped minds they see.

What about all of the flooding, the horrible and completed demolishing of many of our states in the past months with water, MUCH, MUCH MORE water, drowning people, again demolishing everything in its path, leaving people once again homeless, without jobs, and the loss of everything that they ever worked for and cherish.

The EVIL out there that lurks in movie theaters, in Malls, on Highways, on our own city streets, that think no more about shooting people and killing them than they do breathing air... the morality, the greed, the power hungry, the people that have NO care for "human life"... and what makes that even worse, is OUR YOUNG PEOPLE... are many of these horrid, evil filled "humans". How can someone so very young get to be so very wicked in a few short years of life?

How can the "educated" ones that have knowledge at their fingertips, families that love them, take off to some "foreign" nation that literally HATES all Americans, and "join forces" with those who intend to not just harm us, but kill us, and then they strap on "bombs", blowing themselves up, in the name of "a higherpower"????


NEVER have I ever thought not one moment about me taking my own life in the name of the "Lord and Savior" that protects and saves me. Not only would I disobey one commandment, but I would disobey the very fiber He made me from!!!

It makes me literally SICK to watch the news be filled with all of the "junk" about a new President!!!!  Yes, the upcoming election is important to all of us in the USA!! BUT, at this moment it is NOT above the sick, the dying, the starving, those running for their lives from war, killers, that kill not just men, but women, children - it matters NOT who it is, they kill them... People are literally running from fires that are engulfing their homes, and from flood waters that are washing away their lives...


I "rarely" discuss politics... I feel ALL are entitled to their own views... BUT, I sure as heck right now am not concerned what so ever about a Hillary Clinton "private server" and emails that probably don't have a darned thing to do with her being a Nation Changing President!!!! But, I can tell you, if we allow that LOUD MOUTHED "satan tongued" Trump to be over us as a "Leader" of the FREE WORLD... well he will have us blown up within the first year by someone he has opened his foul mouth to in some other nation, and makes them hate us even more than they already do....

And whether you are a "Republican", "Democrat", OLD, YOUNG, MIDDLE AGED, MALE, FEMALE... or of any race... NONE of that matters either!!!! I want the President to be someone who can take the reigns and reign in CONGRESS... and STOP CONGRESS from being a bunch of Kindergarten's and bickering, mud slinging, name calling, and just being plain bull headed and only want what is best" for them... WE "elect" people that are supposed to take care of our nation.... what email they sent 4 years ago, to a friend in Florida, who cares?????

But, you can bet, whether a Congress Person, a banker, lawyer, doctor, or Indian Chief, MOST are OUT for the OWN GAIN!!! GREED, CORRUPTION, LIABLE, SLANDER... all bull... which has gotten us no where over the last 16 or MORE years, but deeper in debt, while the "few" with that "power" get richer and the middle class struggle to keep a job, put food on the table and a home over their families heads....

So, rather than going on and on and on.... about who said what to whom on their "Blueberry - Blackberry - Raspberry" or these "Smart phones" that are surely "dumb" to me, I don't care.... ALL of us fall short of perfection... ALL... and SOME of us have never even thought to strive for being "perfect" - Yet, we try to be the moral, upstanding, truthful, loyal, and honest as we can be....

So, to HECK with 16 or whatever "Republican Nominees" - ridiculous - and thank goodness PERRY quit!!!! Good news for the nation.. and now TX is rid of him also...


And whomever can stand up, and tell ME, how they intend to try and turn this country around... our stock market reeling - one day up and the other the "worst" down in history... people's life savings not making a dime, and Social Security and Medicare... OH HELL that is another BOOK, not just a post... someday, after I finish including my thoughts on those, my book may be much THICKER than anyone thought I could ever write.....

So, when you bow your heads this evening at a meal, or with your kids as they go to sleep - or if you do as the Lord tells us, "hide in your closet" and pray... then you have a direct line to WHOM can turn this country around.....

Thoughts as I ponder my own Health, Lupus, RA, Sjogren's, those that "harm" us, those that have all disregard for human life.. the nation and world in vast and deep trouble...

I put up a couple of new pics earlier on Facebook and I wanted to post them here, and then write about some stuff I've been wanting to write about... lots to do with my own life journey, this river of all too often the "unknown"... we  ... none of us know what the next moment holds... we are not meant to... thus each breath leads to another "surprise" of life... this below is about dealing with illnesses, chronic in nature... Lupus, RA, Heart problems, Sjogrens' the severe pain of them, they tend to try and consume your life, mind, heart and soul... and how then a relationship, although we never know either can literally "suck" the life out of you... before you even know what has happened.... So, I wish each of you, a good life, be safe, love one another every day, every moment... do NOT let a moment pass by that you don't try and make someone else, yourself, or even your "four legged" friends... (I speak of my pups) that you don't love them, and tell them often... 

We never know if we will be shot going down an Interstate, or bombed and terrorized in a church, place to eat, on a job.,, in a market... WE have MANY, MANY Horrible people that spend their life "killing others" and never bat an eye doing it... it is all around, and we hear, read and see is way too much... our NATION and OUR WORLD are in much need of PRAYER, PEACE, AND HARMONY!!! ... YET, too many do not have any regard for human life... I just don't and cannot fathom that they do that in the name of their "god" or whomever they worship.... 

After the SEVERAL what feels like MONTHS the past weeks... I needed to hear something "positive" 　 I have been so totally frustrated with "life" in general... mainly of course illnesses and medical issues. I am still not "completely convinced about this leg being "not infected... but the surgeon I went to has been practicing for many, many years... so I must have faith that he knows what he is looking at. I learned a few things from him by asking questions, especially about MRSA, and what to look for and so on. I am not sure why that even though this lump was "abscessed" is it not "grow" anything. You would assume it being "infected, which is what I "assume" abscess is, that there would be some type of staph, strep, or something that would grow out of that culture. He took two... because I actually had two pockets of abscess from what he said, one not very deep, but the other quite deep into the thigh. I am still taking extremely good care of it, and not going anywhere without it covered and I am still actually covering it with gauze. For one, with the two pups, and then jumping to see me, especially when I sit down in the evenings on the sofa to watch a = movie with the, they both are pawing at me, or putting their heads on my legs etc.. vying for my attention,.... talk about UNCONDITIONAL LOVE!!! That is what I get from Bub's and Tazzy.... they love me in spite of being ill so much, being not able to sit with them every moment of the day LOL, if I have my makeup on or not, no matter how I am dressed... they love me... too bad I never found a "spouse" that was so committed to me... Yes, I did say that...I am so "fed up" at the moment with people that "commit" themselves supposedly 110% and vow to be there no matter what, yet when the tough times roll around, guess what... GONE... on 60 SECONDS! I was totally "committed" to each and every relationship where I said and vowed to do that. But, as we know it takes TWO!!! I could not do "all the work" and the other party not want to work at it at all... and in fact at the moment I am quite livid in the fact, that I've been deceived, lied to, cheated on, and you name it, and I know that even my neighbors who have known me now 8 years must have been "told" I was the problem!!! They barely even "look" at me... and they were here all the time "before" the other party left for Seattle... so I can't help but think someone said things that make them think I "threw" it all away etc... when I never did such... but after trying to work on it for almost 13 YEARS... between my own health, my Mom, and ALL that I need to do... things that I gave up, in order to make a relationship last, I am SICK of GIVING, and someone else doing all of the TAKING!!!! Plus I am TOO OLD and TOO much water has flown under the bridge, that I shall NEVER "beg" anyone to be with me, or stay, and so forth... I am too disgusted with all of it, to even truly have the stamina to "fight" for someone to be here. I am just as well off, even though I am lonely at times, the pups as I said love me, no matter what... and I've vowed to NEVER again get into any "long term" anything... And no one say "Oh, you will feel differently later..." NO! I won't... I am going to spend the time that I "wasted" on committing to someone who just took full advantage of my tenacity... and put all of that COMMTMENT back into getting myself as well as possible, writing my (or may I say finishing") my 3rd book and getting it published, along with more much more energy into my blog... which is doing fairly well... and into my activist and advocacy work... those things are where my true nature, my passion, my love, and what I feel my life is truly about... and no more will I forego those things to try and make someone else happy.. if they cannot be happy themselves, then I certainly can't make them happy .... I am off to post this on my blog... do a few things I've got to catch up on... I spent yesterday outside a great deal... washed and got most of my car waxed... and got some of the dead limbs and trees down that my neighbor "left" rather than take down as he said he would before he built that UGLY HUGE MONSTROUS WHAT IS SUPPOSED TO BE A GARAGE... it is bigger than my house! So, I've got lots of things I have to do for my home and I am already too vested in it to not finish what I began... so as the next moment, hour, day, week, and hopefully YEARS flow... my hopes are to "do" exactly what I feel my true "calling and purpose" here is.....