Starting 2016 The New Year Off Right! Lupus, Joint problems, Surgeries, Pain Pump Replacments, Cervical Disc Surgeries, & Seeing the "Positive" Side of a New Year.

Morning Everyone! Well, I must say, I know there are MANY, MANY of us that are GLAD to see 2015 come to a close. Gosh, the number of people that I've came in contact with both on Facebook, and here in my hometown, that have either endured so much loss, or have been extremely ill, in the hospitals, had surgeries, have had major issues with Lupus, RA, Heart problems.... Sjogren's and the list just continues.

I know I face, (now the the 1st one the pain pump replacement surgery is done) at least one surgery. I have to have that cervical disc above where my doctor repaired the others (he is kind of wishy, washy but I think it's probably C-2-C-3.. not sure but am going to look it up. He did an X-ray and saw that I have a disc, at least one, that is 80% "collapsed" which is causing all of the severe neck, shoulder blade, and down my shoulders, into my arms, wrists and even thumbs... pain... at times it is almost unbearable... if I drive even to Dallas about 40 miles or so, it hurts so badly... so I know that has to be dealt with.

Also, the lumbar/sacral disc at L-5 (I think) and S-1, anyway, right at the bottom of my lumbar spine where it begins my sacral spine is also a mess... plus I have some issues with the "opposite" of scoliosis, where my spine tilts "inward" rather than outward... and I've had a "sway back" all my life... so that is certainly not helping but I don't think there is anything they can do about that, but he can fix the disc down there.

Once those things are done, and then I can go to my Rheumatologist, and we re-evaluate all of my medication for RA/Lupus etc... and possibly make some changes then I may begin to see some positive changes for me as far as function of what I can do, and lesser pain, hopefully.

So, even though I "make" A New Years "change things" list... some of it is more those types of things, so I can again have some quality of life...

I also know we must "deal" with my Mom, and all that has been going on with her.... she is much better after the injections into her lumbar spine, which is awesome, but the issues about possibly having "dementia", or worse, ALZ, have to be looked in to...

Other than that, I want to be able to do MORE of my advocacy work, and get back to cross my fingers, eyes and toes, of finishing my book... I've been trying for 2, almost 3 years now, and was on a roll, then between the accident with Jim, the lawsuit, trial, illneses, my teeth and losing those, then Mom being sick, it seems I cannot either find the time, or have enough "energy" to stay and type on it. I have some other things that I had not thought about that I am adding to it. When I was telling one of my high school friends I grew up with about my "home life", when I was young... she told me that I really needed to address those in the book. They in themselves caused me to "think" and do, or not do things throughout my entire life. Nothing that Dad did that was "bad... he was a great Dad, BUT his being over controlling, even when I was in my 30's, and him trying to "help" but he was also trying to place things that he went through during the depression, "on and in my life"... and thus things like me marrying much too young etc... all have had a very prominent effect on how I've lived, and the things I've done, and why I didn't do some of the things I so wanted to do....

I inend on giving YOU, my BLOG READERS much more "facts" and information about "All things Autoimmune"... I hope to really ADD some very important issues, from medications, from how the government effects our lives, about the latest things to get help. hopefully get more people involved in GOOD clinical trials (I know people that have been truly amazed in clinical trials) and work with WEGO, The Arthrhtis Foundation, With the Pain Foundations, plus others such as the Lupus, Sjogren's, RA... and more things that can help YOU as patients, caretaker's. family, friends.... to understand the way these illnesses effect each and every part of a life, from physical, mental, emotional, spiritual... and why "we" do or do not do, things.... due to often "invisible" illnesses and pain....


One for instance, I had "major surgery" last Monday. I had my pain pump that "stalled" replaced. I am really not supposed to be doing much of anything, BUT I am by myself for now, so there are things I must take care of... and can't wait... So, I had not been to the market in a week, and needed a few things... NO, I was NOT feeling the best, but I got dressed, "forwent" the makeup, and went to the market. Well, I was not "moaning" in pain, or even acting as if I had "surgery"... the only things I did do, is ask the guy bagging my stuff to keep my "bags" light this time, because I was not supposed to life anything over 5 pounds, and was not supposed to use my arms over my head... well there are MANY things a person needs to get, reach, etc... and it calls for putting your arms over your head..

Of course I got home, and I was "good" I did bring in one bag at a time, rather than grabbing several, as usual... and tried NOT to do anything he told me NOT to do... yet, people around me in the market, unless I "told" them would have never known I had "surgery" or that I was in pain..... we sometimes "hurt" and it shows.. but we also have learned to "suck it up" at times, and try to not let that type of thing effect our lives... I don't want to think someone feel "sorry" for me... etc....


Okay, well I need to get some other things done, but I wanted to "catch up" as to what 2016 shall mean HERE, and what I plan to try and do to HELP MY READERS!

Wishing YOU and YOURS a blessed, healthy, peaceful, calm, faith filled, renewed hope and love for 2016!

Rhia

Stevie Nicks - My Idol, My "Name Sake", My Muse.... what an Incredible Woman... and I love all of her songs... yet this one fits right now so well.....

Have You Forgotten....Me.... by Stevie Nicks my Idol, my "namesake"... my Muse....


You've left me now and its seasoned my soul
and with every step you take
I watch another part of you go
I continue to build the wall
You were so strong I fell to my knees
and I don't think I can handle this at all

Well, one more night I'd like to lie and hold you
(yes, and feel...)
to make you smile, I'd like to be there for you
have you forgotten...me

and the days go by
doin' nothin about them
how much time
will i have to spare

my mind won't rest, and I don't sleep
not even in my dreams
if you ever did believe for my sake
if you ever did believe

and the days go by
(by...)
doin' nothin' about them
how much time will I have to spare

and the days go by
(by...)
doin' nothin' about them
how much time will I have to spare

well, one more night I'd like to lie and hold you
(yes, and feel...)
to make you smile, I'd like to be there for you
have you forgotten...me

baby don't leave me
baby don't leave me
baby don't leave me
im down on my knee

Petition and Comments of the Docket from the CDC on Pain Medications - we need your COMMENTS AND SIGNATURES!

This is a Petition in the Government Petition organization and we have over 20,000 letters and signatures on this one....

 

http://www.petition2congress.com/5202/first-do-no-harm-dea-targets-physicians-who-treat-their-patients/view/


As this Petition is titled our doctors have been sworn to "Do No Harm" and if WE as True Pain patients cannot get our medications due to these ridiculous guidelines, then our doctors are going against the "Oath" they took to be physicians!

The DOCKET located here :

http://www.regulations.gov/#!docketBrowser;rpp=25;po=0;dct=PS;D=CDC-2015-0112;refD=CDC-2015-0112-0001 

Has 1,300 COMMENTS but we need 13,000 or 20,000 COMMENTS!!! Please go in and take a few moments to comment and to sign the petition, you can do it anonymously if you wish... we have until January 13th... so be sure to get those in by then... it will close and then will will not be able to comment, and if you can't do it online, there is an address you can mail your comments to directly!

A Happy New year as we Welcome in 2016 - and New Pain pump is now in

WISHING YOU AND YOURS A VERY HAPPY, SAFE, HEALTHY AND PROSPEROUS NEW YEAR! MAY 2016 BRING PEACE, HOPE, FAITH, AND LOVE TO OUR NATION AND TO OUR WORLD!!! MY HOPE IS FOR ALL OF US WHO HAVE SUFFERED THROUGH SO MUCH FROM PAIN AND ILLNESSES, TO LOSS OF LOVED ONES, HOMES, MOTHER'S NATURE'S WRATH AT TIMES, AND MORE... MAY WE FIND A RENEWED PLACE IN OUR LIVES FOR THE COMING YEAR. LET'S PUT 2015 BEHIND AND LOOK FORWARD TO SOMETHING THAT SHALL BE SO MUCH BETTER, FULL AND OVERFLOWING WITH GOODNESS, AND LOVE...

RHIA

p.s. New Pain pump is new... surgery went well... I am hurting like hell today, but I am okay... have a call in to my doctor before he also is out for the holidays to check to see about my medications orally until I see him after the 1st of the year next week, when he will up the meds back closer to what I was used to....

UPDATE - On New Pain Pump Surgery and what is to come....

NEW PAIN PUMP IN AND WILL POST MORE LATER....

A quick post to let everyone know I am home, actually got home by about 11:15AM or so, and how I am doing. I know some friends and family maybe concerned, and I am kind of "out of it" so I wanted to post here so everyone knows I am doing good.... I am so thrilled that a dear friend of mine, who was pregnant with her daughter the same time I was with mine, took me and brought me home. She has has several back surgeries herself, so she knows all too well, about all of this.... I am very thankful that she did that for me.... :)




I am actually home already and all went fine. They had a bit of a mix-up not having the medication there at the outpatient center that he fills the pump with. But, my old pump had quite a bit in it, at least until I see him on the 7th. The did NOT turn up the pain meds in the pump like I thought they would, and that is probably for one due to the correct medications to refill it completely, and then I think he wanted to see how I do for now. I still have more oral med I can take if I need them, and I already knew I came home after a 30 mile ride back, had to take one of them... but they had me in and out so quickly again I am still feeling the anesthesia medications in me... so they are keeping me on the sofa at least today to see how all goes... and to get some rest like I know they wanted me to... so I am not staying on here, just wanted to post quickly to let you know and some of my family and so forth I am home safe and sound... and all seems to have went well...

Pain Pump Replacement in the wee hours of tomorrow morning,..

IN October 2010 I had the original pain pump put in, which should have lasted 7 years or more... and here we are 5 years and its been in "stall" for months.... LOTS of things have happened between 2012 to 2015... some good, some horrible... and some I am so fed up in dealing with... I am SICK OF BEING SICK, I AM SICK OF SURGERIES, DOCTORS, HOSPITALS, TEST, LAB WORK, MEDS AFTER MEDS... Does it EVER END??? or at least get somewhat better... For some reason I am having one of these "diassociative" realms, where I feel I am here but not here... I've had this a couple of times in the past about 4 years, especially when there is just too much to deal with... and I think that is where I am at... I want this surgery, and the other at least one in my cervical spine taken care of... and I want some kind of freaking normal to exist... Sometimes I guess maybe that is too much to ask for... so my friend Carrie is picking me up at 4:30 AM and I have to be at the outpatient surgery center to check in at 5:30AM I HOPE that means I am "first up" and can get in and get out.... and we don't have to spend a whole lot of time up there, but they will intubate me, and put me under completely due to the type of surgery it is... so keep me in your thoughts and prayers, along with my Mom, who is totally worried, and Jim... and my kids... plus Carrie please prayer that she is able to drive and be safe.... she has also back issues badly, having several surgeries herself... so I am sure this will not be pleasant for her either... I shall post when I can... 


Now here I am facing yet another surgery, and two after this one if my neck and lower back don't improve...