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 AWAY...my 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....

New Year - New Revelations - New "lease" on Life, still all wrapped up in an Autoimmune Illness World and How to make dreams come true...

I have under my own terms "swore off" procrastinating about the writing of my 3rd and in fact 4th book. I had a very good email come in this morning from "Create A Space" that had an article about how to "put off" the writing of a book. We can make up a thousand and one excuses, especially if you a chronically ill, or like myself chronically ill, dealing with some symptoms that can really make daily life a challenge. To top that off, now I am kind of the "whole deal" of being a care taker for myself and for Jim. Even though within a short couple of months it will be a year since that fateful car accident, that sent me reeling through a "time space" that still I am not so sure of how I got through it all.

Honestly, I am not sure I truly have resolved all of it in my own head, heart, and soul. I question my own illnesses, and as of late, have developed more symptoms, that truly have started to concern me. I am not so sure that they are from the autoimmune illnesses, I am already diagnosed with. I have this "gut" feeling... that my "gut" feeling (n pun intended), along with the nausea, the extreme fatigue, all of the lower back pain, leg pain, of which even woke up me at 4 am this morning, and sent me rushing to get some medication, and then even though I really wanted to get up early, I remained on my sofa bed until about 7:40 a.m. That had not been my normal behavior for the many months that followed Jim's car accident. I rarely slept. Some days I wished I could go "find" those nights and use them to further the writing of my books.

I am trying to properly place myself where I desperately need to be in order to get this book written by the end of the year. Yet, if I don't heed the advice that I read just this morning by a group of very good writers, I will continue to "put off" the book and never get it written.

So, over the next few months, I will definitely keep my blog "fresh". I won't allow myself not to publish things and write events and so forth here. You, my audience is extremely important to me. So, the last thing I want to do is lose you due to me not posting and keeping current information here, because eventually my heart tells me some of you will be the "audience" that helps my 3rd book to take off enough that I can give a good portion of those proceeds to a couple of very important charity/non-profit organizations that I feel are crucial to the findings about everything autoimmune. From the very beginnings, to the fight going on admist researchers, grant money, patient and clinical trials, standing up to our Congress both state and national to get them involved in such a crucial matter to all of us here in the USA, and the incredible work of those in many of these non-profits who are no longer just "charity" organizations.

They are SO MUCH MORE than "charity" types of businesses. They are the very operatives that go in "fighting" for us as patients, as caretakers, as family members dealing with these illnesses, and to get the funding needed to battle, and win the raging war over how the ruthless diseases destroy so many lives. Whether through loss of jobs, family problems, endless medication and doctor bills, fighting with insurance companies, pharmacies, and the list is endless of the daily ordeals we go through to try and "get well"... or at least feel better, find remission, and a state of "no more disease" to have to contend with.

I promise to do my very best to keep this blog fresh, full of new posts and information while I dig much deeper inside of my own heart, brain and soul to complete this 3rd book. And I know beyond a shadow of a doubt, I WILL accomplish that.

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!!!!!

http://www.arthritis.org

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!!!!

It is Official - I am a "Platinum Ambassador" for the Arthritis Foundation!!!

I was just totally on Cloud Nine yesterday afternoon! I received an email from someone I've became quite good friends with over the last about 9 months or so. She emailed to tell me that I had qualified for the "Platinum" Ambassador Activist, which is an elite group of Advocates!

I had tried to spend lots of time this past nine months or so, putting myself into the throws of Advocacy, Activism, Ambassadorship, .... volunteering to keep me mine as clear of "brain fog" as possible! Plus I also used my "voice" and Advocacy work to help me not think about the horrid event on March 26th 2014.

It has been a very long way to get this far from Jim's wreck, and have some type of "normalcy" to our lives. We still have a great deal more to go, and our "normal" will never be what we considered a "normal day" again. But, through the pain, tears, the smiles, and frowns, and all that has been in between. Each day has been one step, one moment, one hour, one day, at a time.

Yet, we are blessed that as bad as it really is, it could have been much worse. He can walk, with a cane. Not for very long right now. But, as time goes by, we do have hope still that much of the pain, the stiffness, the ability to be "whole" again.

So, through the "window" pane of activism, and my role of becoming an Ambassador for the Arthritis Foundation (now to find out I made Platinum) feels like an honored victory for myself, and my family.

My Mom and Jim are so very proud of me. They have witnessed all I've done to be as an Advocacy and Voice!

So, that means in March, I get to go back to Washington D.C.!!!!! The Annual Summit will be there again next March, and I'll have my "warm, fuzzy, walking boots ready! Last year I sure wished I had taken them, so this time they WILL BE with me!!!

So, that gives me another realm of my "voice" I will work on throughout 2015! There are lots of new things in store from the Arthritis Foundation, and I am elated to be a part of such a worthy organization.


I will keep you informed of course as time goes on. My blog will be a huge part of my voice, and now I have something else to put into my book, that I hope to finish up by the end of 2015!

http://www.arthritisfoundation.org