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.....

Reflection - Where were YOU on that fateful day or Horror??? 9/11 changed all of our lives and this world forevermore...

Gosh and 2001 had already proven to be one of the most hardest years of my life. On the 8th day of January 2001, I had a heart attack. That was about 10 AFTER the man I was married to for almost 18 YEARS walked in on Christmas Day 2000 ( he had been gone like usual and I had no clue where)... So, the kids, and some of their friends, were at the house for Christmas Day. When he showed up, he "threw' a present at me, said he was leaving, and probably would not be back, got some clothes and left. Everyone was gone that morning that I drove myself 20 miles to the closest ER. I had been not feeling well, and having some chest pain for the 3 days prior. I thought I may have bronchitis, so I called my doctor at the time. He told me to get to the nearest ER immediately. Well, I was "chatting" with a dear friend who lives in Malta, and she told me if I did not either call the ambulance or get myself to the ER, she was going to call from Malta, here to TX, where I was and have the ambulance come and get me herself. So, I promised her I would go, and thus got up and went there. As I drove, I put on my flashers, but did not want to drive too fast. I had no clue what my might while I was driving. But, I made it to the ER, walked in and told them about the chest pains, and they immediately and swiftly got me in a room, began an IV, gave me an aspirin, and started doing an EKG, blood tests etc... they also came in and gave me medication into the IV, that cost 2,500.00 for one dose... a bit later a doctor walked in and he told me that I had an MI, and that the initial blood work showed I could have massive damage to the heart muscle. I still had not called anyone to tell them. But, they knew me there at the hospital because I had worked as a Patient Rep there for 6 years, and one of the nurses told another friend of mine who was still there in the business office. She in turn called my parents, etc. They wanted to transfer me to Baylor in Dallas. But, they had to stabilize me first before they could. So, I was put in the ICU unit... I found out that $2,500.00 injection probably saved my life... it was one of the newer "clot busters" & it basically stopped the heart attack and prevented further damage to my heart. But, it was still unclear until they got me to Baylor via ambulance the next day. I HATE ambulances and hope I never have to ride in one again. I had already done that twice, and then after that I actually have been once again in an ambulance I think now 3 three or so... Anyway, as soon as I was put in a room in the cardiac unit there at Baylor, they began tests to see what was going on, how much damage, if I needed stents and so forth. So, they did an angiogram, which they put an incision right almost at the bend of my thigh and pelvis, ran wires up to my heart, where they could see what was going on.... well, I was of course awake, maybe a bit sedated but not much, and the doctor said something like OMG or something. I thought he had found something horrible, but he saw one of my main arteries going into my heart spasm... thus they felt that may be a part of the factor to the heart attack I had at 40!!! From there they discovered that the damage was minimal due to that injection, which was why at first the enzymes in my blood were so high... it stopped the damage thus allowed those enzymes to be rather extreme... I went home 7 days later, with ONE thing that shall always stick in my mind. I saw my cardiologist about 2 weeks later. He told me either I CHANGE everything in my life and do whatever it takes to get away out of the grips of whom was making me sick and hurting me... mentally, physically and emotionally, OR he would kill me one way or the other... so I went home, got myself together, packed what little I could after my 6 week follow up and headed for Lancaster CA. I had made a couple of friends there via the internet... and Aimee told me I could come stay with her and her Father, get a job, and I could stay there even after she moved into her apartment and have her room at her Dad's home. So, I did. I got busy trying to find a job... in fact for a couple of weeks, my "job" was to find a job. And I did. I was supposed to start one, and it got delayed because that company did not have their equipment, computers and so forth ready yet. So, I interviewed for another, and was to go to work that next week. In the meantime the place that helped me find the job, had a "temporary" job in a warehouse close to where I had been staying. I could work that for a couple of shifts until I went to work that Saturday at my permanent job. Well, in the process of cleaning up shelves and so forth in this HUGE warehouse, I knelt down on my "bad left knee" and I felt it immediately. I had torn more stuff and damaged it. I had to leave the pain was so bad, and by the next morning it was swollen so much I could barely bend it... But, I worked that Saturday at the new job, loved it, and my thoughts were to stay work long enough to get on insurance, and have the knee seen about. But as that day wore on, my knee got worse. That Sunday, I made the difficult decision and had no choice but to get in the car with my stuff and come back to Texas. I was still covered by the insurance that paid for the heart attack. I got back here and within a week had seen an Orthopedic Surgeon, had an MRI, and was having knee surgery. From there I got "better" and went down to Austin to find a job. A dear friend of Aimee's lived in Austin, so I was staying with her and her boyfriend... I had found a job, and while I was there, I exercised, walked, and did house work and so forth for her, and got in much better shape physically. So, my plan was to actually move much closer to my parents and to the kids, so I decided Austin was just not where I needed to be... so on September 11th, 2001 I was in Ft. Worth TX, heard something on the radio, and turned the TV on to watch the 2nd plane hit the 2nd World Trade Center Tower... after that everything was just nuts.... I watched for hours and hours that horror unfold... I could not take my eyes off the TV... and I called my Mom and Dad, because at the moment none of us knew exactly what could happen... so I tried to get hold of everyone to tell them I was safe, and check on them. I made a brief stop back in Ennis, and then is when my life entirely changed for the better. In the back of my mind, was that voice of my Cardiologist, get out and away from "him" - speaking of my now ex-husband or he is going to hurt you in one way or the other... thus on October 31st, Halloween Night, 2001 i got off the bus in Seattle WA, which totally gave me a new life, new job, new friends, and I was "free" of the abuse and horror that I had been through for years in TX. I filed for a divorce before I left TX, then flew back later to "seal" it in front of the judge. For 5 years there in Seattle, I cannot begin to tell you how much I changed, I grew stronger, I had more faith in myself, I made my own decisions, I loved my job as an Apartment Manager, and even bought my 1st car, that was my own. From there the story goes on, moving back to TX 5 years later due to needing to be here for my Mom and kids... but to this day, I shiver at what I saw on that TV, and witnessed the bravery of many who risked their lives to save others.... I am sure for many of us, there is a deep scar in our hearts, that still remains after that day of horror... and now we live in a MUCH different world for sure.... we have to be diligent everywhere, from church, to a Mall, to our schools, to even a Movie Theater.... to just being out on the street or highways driving. Since 9/11... our lives are lived around almost an "untold" and "unspoken" deep seeded fear, that anywhere we go or are, we could be a target for someone who hates mankind... the terrorists are not just in New York, not just overseas, but they are our next door neighbors, a family member, or that stranger in a car that may drive by.... that is right our children will never know and their children... that "freedom" is not what it used to be... It is sad and now once again this nation and just about every nation in the world have "turmoil", war, death, starvation, droughts, terrorists, people that "prey" on their own kind... the reflection in the "mirror" of life is no more and never will be again.... Thanks Jason Harber what you said and what Amanda Batson- Matheny said along with many of us will reflect on today... and just how much we have changed as "humans" of how we feel we must "not trust" as much, we can find ourselves living in a "fear" and may not even realize it... The Memory of the Loss of so many innocent lives will always remain, and what those terrorists took was something from ALL of us... and left us with fear.... my thoughts, prayers, and in Remembrance of ALL who "lost" - I pray that no more will we have to endure such horror....

Day 10: Pain Awareness Month - US Pain Foundation and a great video to find out much more about Pain Awareness Month, the US Pain Foundation and How you can help!

Exciting News for IFAA - -FINALIST FOR INNOVATION AWARD! "Celgene" Innovation Awards

HOORAY FOR IFAA-FINALIST FOR INNOVATION AWARD!

The International Foundation for Autoimmune Arthritis is a FINALIST in the 2015 Celgene Innovation Impact Awards: “Unleashing the Patient Voice in Research”, with awards up to $100,000 for our submitted project idea!

IFAA is dedicated to bridging YOU with scientists so that OUR needs can be heard and then turned into real research projects. We are problem solvers, it’s what we do. Hopefully we are able to push this to the end and bring home one of the awards! Autoimmune Arthritis patients- it’s our time to be heard!

Congratulations to all the finalists:
1. Aplastic Anemia & MDS International Foundation
2. Cancer Support Community
3. Crohn’s & Colitis Foundation of America
4. FORCE – Facing Our Risk of Cancer Empowered
5. Foundation for Sarcoidosis Research
6. International Foundation for Autoimmune Arthritis
7. MDS Foundation
8. National Psoriasis Foundation
9. Research Advocacy Network
10. Pancreatic Cancer Action Network

IFAA, Tiffany and the Entire Dedicated Group with the International Autoimmune Arthritis Foundation - Thank you!

I had a very pleasant surprise at my door step Tuesday after the holiday weekend! My “regular” mail had already came. But, later in the afternoon, I stepped out on my front porch to see a large package with my name on it!! At first, I thought it was the “blue ribbons” that I am waiting on for pain awareness month. They have not sent them yet… BUT, IT was ALL KINDS OF AWESOME STUFF FROM THE IFAA AND TIFFANY! I was so thrilled when I opened it… an awesome very sturdy reusable bag, along with others that are also perfect to take to the market from the WAAD 14! I also had a nice pen with the IFFF Logo on it, and a huge book that came from the Autoimmune Summit 2015 - with all of the data from research and so forth they discussed at the Summit in New York! smile emoticon I am really enjoying lots of the data in there… extremely interesting to me… anyway, I will get a better photo up later. I had to take this one with my “web cam”. I am charging the battery on my good digital camera. So, I will make more when it is charged. Again, Thanks to IFAA, Tiffany and the entire gang… what an awesome job all of you do…. I hope to soon participate more. Due to all of the “circumstances” between my own health, My Mom’s health, then all of the other personal “agenda” that I HOPE to have basically over with in October… my hope is to get back on tract with my activism, advocacy, my own research, and doing more writing on my book, as well as working even more on my blog… by the way my blog seems to be “getting more attention”… and I am thrilled about that…

 To Learn more about IFAA, want to join in their Advocacy team and more  the URL IS:

http://www.ifautoimmunearthritis.org/