Monday, June 22, 2015

"Cake" The Movie - A "must see" for all of us who suffer through at times "intractable pain" & just how it truly effects every part of our lives

I haven't finished watching the movie "Cake" with Jennifer Aniston in it. I started it earlier in the afternoon, because I've been waiting for it to come out. After seeing the information on it, on the Arthritis Foundation Website, and then watching a preview of it, I knew as soon as I could find it, I would watch it. I knew it would not be "funny"... and I knew it would probably be a very difficult and sometimes even emotionally painful one to watch. So far, Jennifer should get an Emmy, Golden Globe and whatever else they give out for "best performing" artist. She is totally amazing in this film, and she truly gives "heart" into just how horrid life can turn on a dime. As I took a break for a moment, and walked outside looking at the deep dark clouds around, I realized how within a "breaths space" as my saying goes, that life can go from "good, you are working, in a good relationship, have a home, family and all seems to be going well, and before you can turn around ALL of that and more become like someone put your entire life into a blender, blended it well, and poured it all over the floor... and like an extremely difficult jigsaw puzzle, you don't even know "which piece" to pick up, and how to begin "trying to glue" your soul, your heart, body, mind, spirit, everything back together... to even somewhat "resemble" how it used to be... pain, whether physical, mental, emotional... whether from accident, illness, or whatever may bring it on... can sometimes for some be much too hard to bear... we ALL step into the "space between"... dark and light... trying to decide whether we need a "flashlight" or a pair of sunglasses... and everywhere you turn... it seems to be the wrong direction... I have NO answers... but I STILL have the "want to"... to continue to put one foot in front of the other, to climb one inch up the mountain, and when I begin to fall, dig my heels in and sometimes they may bleed, along with the fingers that the rocks have dug into also... but determination, will, longing for the better, and knowing for SOME REASON I am HERE!!!! ... I continue to be "here".... I may never fully understand the "why's"... and honestly right now... if I try to even begin to figure it out, I just get more confused... so I just "am"... and I will listen to my heart, and my head... and I know those will point me in the direction I need to go.... I say this because I truly KNOW there are MANY just like myself... and YOU also, may not know the "answers"... but you can certainly take those "baby steps" to a better reasoning someday... as to the full truth.... Each of you that continue to ask about me, pray for me, be concerned about me... and love me... without condition, just as I am... Thank you... and if you feel you are "strong enough" emotionally, I ask you to watch, the movie, "Cake".... 


 
















After I finished it, I was a bit "bewildered" by the ending. I know as she "Jennifer" did what she did at the very end, it was a signal, that from there she would begin to "heal". I guess I expected an ending possibly of a bit more of how she began to put things into perspective. But, then as I thought about it throughout the rest of the evening and this morning, that it was left up to us, the audience, and possibly those of us suffering from such a tremendous, almost unbearable heart break, that we vary, all of us, how we "move past" loss, whether of someone we love, loss of our "normality" of life".


I am glad I felt "strong enough" to watch this. In so many ways, it "fit" just what I am going through at this time in my life.... my own illness, pain, and all that goes with it (them), a "loss" of who I am, who I used to be, and still wished I was in some ways, a loss in a relationship, actually do to an accident, not the loss of a child, which I just cannot begin to fathom just how painful and horrible that has to be... but a loss in a relationship I've had for 13 years... basically due to a few moments, and within those moments everything in two lives changed forever....

I saw pieces of my own anger, frustration, wanting one moment to be alone, and the next wishing someone would just hold me... and tell me things will get better... and in the next breath the anxiety of how I will accomplish all that needs to be done, and then the realization, as ill as I am, I HAVE BEEN doing EVERYTHING anyway... so why is "now" any different than a few weeks ago? 

The pushing away people so they don't see the fear, the anguish, the heartache, or the pain, physical, mental and emotional... days like today, that I would just as soon sit on my sofa, with my two pups beside me, and do nothing but watch movies all day long. Which in reality, I could. But, that would not do anything but put me further behind in things that I either need to do or things that I want to have done, most of which I have to do myself.


So, chronic illnesses, chronic pain... all of them... whether autoimmune, that effects every aspect of your entity... your body, sometimes in so many different ways and in different parts of your body... emotionally having something chronically with you, illnesses and/or pain, tears you mentally to pieces... it just does and anyone that would say it does not, has not came to the "reality" that they are truly ill. 

The brain fog, the slowness of thoughts, forgetting things, having notes to keep up with notes, calendars, and still forgetting appointments, birthdays.. and even if you do remember more often than not, you just don't have the strength, or stamina to go to an event... even going to the doctors office or going for a test of some kind is just such a major ordeal, that I just find myself postponing a test, because I just cannot stand the idea of having to be put through it.

Besides I already at times know the results, and the test honestly is just to "cover" the doctors butt, and to shut the insurance companies up... they waste so much money and time... when you could have had whatever "fixed" and be healing rather than going through some expensive scan, test, etc... that still does not give them the things they need to know. I have more than once some to figure out, why it is to the point of so many tests, scans etc.... each and every time I had a "joint surgery"... when they actually can "see inside" the joint in the surgery, they find it was much worse than any CT, MRI or X-ray was showing... so to me, once again so many hundreds of thousands of dollars just wasted, along with a patients time... when surgery is the only answer to truly KNOW AND SEE what is exactly wrong.


I hope you do watch this movie, you get some things out of it, that shall help you find your way through it, and take something from it to help you, and your own chronic illness and pain...

Sunday, June 21, 2015

Secukinumab - A new kind of ankylosing spondylitis medication on its way?



 A New Kind of AS Medication Coming?


http://www.spondylitis.org/press/news/637-Secukinumab.aspxSecukinumab -





This is incredible news for those with AS! There have been a great deal of sites, and lots more information about this not so long ago, almost unknown autoimmune disease. Again, like many, it is becoming now to be figured out, some of us that may have had a different diagnosis, now may come to find that AS is the problem.

Here is the complete press release that is on the Spondylitis URL:


http://www.newswire.ca/en/story/1552883/novartis-announced-one-year-results-demonstrating-sustained-efficacy-with-investigational-secukinumab-in-ankylosing-spondylitis-patients-at-eular



The "Longest" Day Alzheimer's Awareness Month....

http://www.alz.org/abam/overview.asp

The "Longest" Day Alzheimer's Awareness Month....





"Go Purple" and Pledge to Help Fight Alzheimer's Disease! June is the awareness month for this horrible disease...


Such a critical health issue, that effects so many around the globe. My Grandfather suffered from this tragic disease, and my Grandmother had dementia, which seemed like the beginnings of Alzheimer's also. It was terrible and sad to watch how much this truly changed my Grandfather. Every once in a while, you could see the glimmer in his eyes that he knew myself and my 2 kids. My daughter was only about 2 years old at the time, would crawl up and sit in his lap and put her arms around him! You could tell he knew who she was, and in the next moment, he maybe frightened that "men" were watching through the windows, or rats were coming through the floor... it is a horribly bad situation, that many live with for years and years, both the patient and the family members.


Find on Facebook at:

https://www.facebook.com/actionalz 

Happy Father Day To all of the Fathers, Grandfather, Father to be, and those men that have been like a "Father" to some...


    Wishing All a very Happy and Beautiful Father's Day!

While I have this on my mind, and before I decide to probably run over and visit Mom, I thought I would say "Happy Father's Day" to ALL of the Dad's out there!!!!! My Dad passed away 10 years ago this past March 27th. Even though it has been 10 years, I still miss him almost everyday of my life. I find myself at times wondering how he would "do something" I may be working on, or when I am tending to my plants and lawn, how beautiful his lawn, garden, flowers and all used to be. I have all kinds of great memories, from "running over him" when I was 6 with my brand new bike. I begged for him to take the training wheels off and he finally did. He was working on some quail pens in the garage, he used to raise them, and I forgot the "brakes"... LOL... I ran right into the garage, over the pens, Dad and all... when I recall it now, it is just too funny... he was a man of many talents, from singing, to loving the outdoors, his lawn, a garden, he made home made jelly, he loved to hunt and fish... and I was just a bit of a tomboy back then, so just about anywhere he went, I wanted to be right there beside him.. I think many things I've learned from gardening and plants, to wanting people to just tell the truth, and he was the same, he would rather hear the truth no matter how badly it maybe, than to lie to him... He was "Overprotective" of me, but I came along many years after my half-brother... who went into the Air Force when I was about 5 or so, and spent 20 years all over the world until he retired. So, I was like an "only child" and a girl also. He like everyone was not perfect. But, I loved him and still do no matter how perfect or imperfect times were. He taught me the love of "people"... he enjoyed being around people, and always had the utmost respect, and I feel he was always well liked around our community. So, in honor of my own Dad, Minnis, and to ALL Dad's here and those who are now not on this Earth... I wish all a wonderful Father's Day!!! Enjoy your family, kids, spouse, friends... time flies by too fast.... Rhia Steele

Saturday, June 20, 2015

Medicare, Disabilities, Chronic Illnesses, Chronic Pain... and going through the "hoops" to get the help we need...

Morning gals and guys... or guys and gals, however you want to put it. I realize I've been almost "quiet" the past couple of days, which is not like me.

I've been doing several things, from continuing on my spring/summer "cleaning"... believe me when I get into one of these moods, if it is not "nailed down" it may just get thrown away, given away, or whatever... but it will not stay in this house for sure.

I do this about 2 - 3 times a year. I guess we all have a certain "time" that we decide it is time to "junk away"... I am not a "hoarder" by no means. But, I do believe in hanging on to some items, knowing there will come a time, I will decide I need a certain item.

So, like many, I have a "guide" I go by. If I have not needed it, thought about it, worn it, looked at it... for OVER a year or a bit more... then it's time to either get rid of it, or decide to use it in whatever way I intended.

I don't like to be one of those who hangs onto every plastic butter bowl, or every coffee can, or old towels, sheets, or even clothes. Usually on my clothes, I have a few tops I wear around the house daily. They are probably not really fit to run to town in, but okay enough for around the house. Then I have some I wear for everyday errands. Those I wear to run errands in, to the market, to Wally World... and when they get to the place, they are looking kind of "not all that great", I use those around the house, and by then it is more than time to "chunk" away the other old house tops. You can bet by then, they are stained, probably are beginning to have a few tiny holes in them and so on.

As far as my "dressy"... more go to the Casino, out to eat, or something else ... that I feel I need to dress up for... again, I go through them a couple of times a year. If I have not put it on, thought about it, even remotely considered doing anything in it, then usually it goes to Good Will, if it is still in good shape. I try my best NOT to have LOTS of stuff, that is totally NOT going to be worn here in my closets. Thus, a couple of times a year during the season changes is a great opportunity to take them and let someone else get some use out of them. I do the same with magazines, books, and the like. If I can "reuse", then I do... if I can give it to others to recycle, reuse, etc... I do... If none of those sound feasible, then usually it goes over to "Soul's Harbor"... which is a store, that everyone does the same. Whether clothes, furniture, dishes, you name it... and you don't really want to throw it out, then we take them there. You can get a receipt for a tax write off, but I don't even worry over that. I always tell them, if you can sell it, or whatever... great, if you cannot... the get rid of it however you do....

Okay, so I've been in the middle of all of that stuff, along with getting rid of 2 old computers, an old desk, some speakers, and just some "general" stuff that rather than let me hauled off in the trash... we have a couple of people that come around and pick up some items, especially if there is any metal in them... they sell it to one of our "steel" businesses here. That way those thing get recycled, the guys can get a few bucks out of them, and that means less waste in our landfills for sure.

I know my family gets tickled at me. I can find some real "odd" uses for some stuff, but when I finish, they are totally amazed. A few years back, we had a pretty good sized tree limb come down. IT was pretty straight, and fairly thick. It was also long enough, in my head, I could see it cut into about 18 inch long pieces, and make flower arrangements with them. So, we cut them in a couple of different lengths. I went around my house and found some of my silk flowers, then went to our "Dollar Tree" and picked up a few more, and 'voila', I had three beautiful flower arrangements, at that time for Christmas!!!

I had one for my table, one of the office and one for the living room! Between some left over ribbon, and lace, a few silk flowers, some floral wire... and a bit of imagination, they appeared to be something you may buy at one of these "DIY" sales, where people sell their items they make. Then I got the idea, I would change them for the different holidays. So I had some flowers and things for Valentine's Day, Memorial Day, Easter... Thanksgiving, and one year even St. Patrick's Day! I found some "green silk flowers" and I had some white ones, and with a bit of green and white ribbon, that made a cute centerpiece on a table or on the desk, or sitting in the living room.

OF course, here I go again, taking the "back way" around what I wanted to write about in the beginning of this.

I read an article this morning about an extremely "lucrative" (for the crooks) scam that took place all over this nation, in regard to "false claims" from Medicare. This is such a horrid thing, ANY PHYSICIAN is NOT a true doctor, if they are ripping off their patients. That is called greed, and any one in the medical profession and others are no professional if they take advantage of something as "fragile" as Medicare is. It just burns me to NO END, that the very people that NEED to be seen by physicians, that cannot AFFORD for our Medicare system to go "belly up" are the ones that suffer from this unspeakable crime. Even though they took down the largest fraud ring ever in this, I am sure there are others out there doing it also... and it appears that Medicare has tightened up and is paying more attention to these kind of schemes. Florida of course is a huge one, but there were several states including Texas involved in this.

Due to migraines, chronic pain, fatigue an  ALL THAT GOES along with disabilities also, NEED there disability (Medicare) also to help keep their health hopefully in check. I know of course some of you are not thrilled about the idea of those on disability... but I PAIN into my Social Security and Medicare for over 25 years before I had to file for my disability. So, I don't feel that I've taken advantage of anyone or anything. I just could not work anymore due to all of my health issues, and I've had to accept the fact, they are NOT MY FAULT! The Lupus, Sjogren's, RA, and so on... "just happened"... I've done nothing as far as I know to cause them....


IT took me a long time to understand, I am not to blame... I didn't go and do something within my life, as far as I know to "cause" me to become ill. You would be surprised though how many of us want to blame ourselves for it,

No chronic illness and/or chronic pain issue is FUN! They are all serious, and they change your entire life and your quality of life in many instances is truly sunken into the depths of the unknown... losing friends, spouses, family... to those horrid diseases, that we have little or no control over.

All we can do is take one step in front of the other, one moment at a time... and continue to hold on to what we can do, have, and hope for in the future.....

I've not disappeared at all... just been extremely busy... for one, fighting of two flares, making changes around my home, as you see above, and trying to fit some of the pieces of me, that seemed to have gotten lost in all of the drama... of daily life....


http://www.medpagetoday.com/PublicHealthPolicy/Medicare/52207


Monday, June 15, 2015

I am here still with the Flares, and more... Lupus. RA, Xeljanz, insurance, and Chronic Illnesses and Pain

 I 've added 3 photo's of what the side on my right knee looks like now.

I thought I should post, so everyone would not think I had up and disappeared! LOL!!! I would imagine "some" people could care less if I disappeared forever and to eternity! ;)  But, that is another very LONG story for another TIME when I feel I can "blog" a bit more as far as my own situation goes. For now, first of all, I am thrilled to be helping WEGO on several projects. I also am of course continuing my Platinum Ambassador activism. I also of course also post, blog, and so on about other chronic illnesses, and chronic pain. My pain level has been out the roof! Yet, I realize that others are either as bad as I am, OR possibly worse. I have been just as busy as a bee with things here at home. From taking down old desks, cleaning closets and dresser drawers, sanding on the inside windows in the spare room... to getting rid of LOADS of things that either have not been used in eons, never will be, are probably to old to use, and things that are generally worn out. I HATE a home full of "stuff" that is just that, stuff. So, I am pairing down a great deal of everything in each and every nook and cranny of this house. I am also in the process of finding my Mom an Orthopedic doctor. She has got to have her hip seen about. It is to the point that even Mobic, and it is a strong NSAID is not helping her. She is "still limping that leg and hip. So, it is more than time to have it X-rayed and get a specialist to either give her an injection into that hip, or something needs to be done. Of course my own issues with my hips, both, and lower back are also nuts. I had to POSTPONE the discograph again due to these flares and the "immune" situation for now, especially with prednisone... thus I am GOING to have that done a week from today on the 22nd... and I hope this time I can get there, and get it over with. I am ready (well no one is ever ready) to discuss "what" needs to be done, not done, and how to deal with the ordeal. I have to get a huge amount of blood work done, especially the "TB Gold" test, before my insurance will think about covering Xeljanz. So, I will go in later in the week to get that done. Then if the insurance will okay it, I will be trying the Xeljanz for the RA etc. I know I had a couple other things to "say" but now I cannot remember them... alas brain fog... ;)

Saturday, June 13, 2015

Paul Gileno speaks out for ALL of us with Disabilities!!!! Now it is OUR Turn to tell Rand Paul how we feel about his comments!

 

 

U.S. Pain Foundation President Speaks Out Against Senator Rand Paul's Disability Comments
 





http://myemail.constantcontact.com/Founder---President-Paul-Gileno-Defends-those-with-Disabilities.html?soid=1103157487426&aid=A6wnyF06XsU

Now it is OUR Turn! Open Your mind and mouth, and/or email hands and type how you feel about these remarks. 



We must stand up not just for ourselves but ALL that suffer disabilities.


#USPain


Friday, June 12, 2015

RA News, Vets and Chronic Pain, & more headlines of the Medical Issues of Autoimmune, Chronic Pain and Chronic Illnesses

http://www.medpagetoday.com/Washington-Watch/Washington-Watch/52086?xid=nl_mpt_DHE_2015-06-12&eun=g773630d0r

Vets and Chronic Pain above...




http://www.medpagetoday.com/MeetingCoverage/EULAR/52084?xid=nl_mpt_DHE_2015-06-12&eun=g773630d0r

Phase III in New RA Medication sees great results...

Baricitinib Shines in Phase III for RA above...



http://www.medpagetoday.com/Rheumatology/Arthritis/52082?xid=nl_mpt_DHE_2015-06-12&eun=g773630d0r

Pain Sensitivity Spikes in OA Patients With Sleep Problems - link above...



Round Two of Bad Weather (I can tell from my severe pain), Lupus, RA, Flares, MORE unbearable pain, Discographs, Ankylosing Spondylitis & More

Looks like Round 2 of the BAD Weather days for my area around the DFW Metroplex, including Ellis County. It is supposed to start out as rain possibly today, but then turn back into Thunderstorms for several days through the weekend and more... so we shall see. I am supposed to go for that discograph on Monday, But, due to having this corticosteroid injection and having both I think a Lupus and RA flare at the same time, and now I am on a step down large dose of Prednisone for about 7 days or so. I am not sure they will even consider doing the procedure. Since they have to inject dye into my spine, and we run the risk of infection even with antibiotics they will give me IV during the procedure, my immune system is not probably really ready to handle it. I am calling them today and talking to them about it before I even try to go up to Dallas early Monday morning. No use in my son nor I making that trip only to have them tell me I can't have it done right now. Also I did find out my PCP will do all of the blood work my Rheumy wants me to have. I'll go in next week and have it and what my PCP wants done all at the same time. I am sure the lab tech will be thrilled! He cringes when he sees me coming. I am such a horrible stick, due to rolling veins, tiny veins, the "blow" on them, they have to "chase them down, anyway... he just looks like he wants to cry as I walk in the door. But, it all has to be done, thus he will have to stick as much as it takes to get the blood needed for the tests. They are also checking for that "marker" for AS (ankylosing spondylitis) HLA-B27... a "genetic marker" that sometimes shows with this autoimmune disorder. From what I read, lots of people can have the "marker" yet never get the AI. Then many can have AS, yet the marker does not show. Yet, my latest symptoms, with the very severe lower lumbar and sacral L-5/S-1 back pain, down into my hips, that almost keeps me from being able to sit at my computer for very long at a time... I just have all of the hallmark symptoms of the disease. Now it may show I have a compression fracture due to the osteoporosis, the reason for this discograph... I don't care what it is, fix it so I can go back to somewhat of whatever "normal" in my life is anymore. Now, that I am basically here with me and the pups, I have LOTS of stuff I want to do at the house.... but in the pain I've been in, I just am almost in tears by the time I sit here for 10 minutes... So, I do need the discograph done, but even my pain doctor, thinks it is a waste of time and money.. it appears I have something that needs to be fixed in that area, so even if we find the AS is present, then I still will probably be having lower surgery on those places on my very lower spine... My hips hurt so badly, even this morning by 3 am I was awake from pain so severe I wanted to scream.... so let's hope they find something and can do something about it....

As you can see again I'm going through hell with the AI issues. Some days just trying to ignore the pain, the inflammation, stiffness, and go ahead with all of my house projects work... and then others the Rheumatoid Arthritis, the Lupus, and now possibly Ankylosing Spondylitis, and more just about get the best of me. I am attaching a couple of links about AS, for those who want to know more, as well as about the discograph... and so forth. 

I need to try and get to work on my 3rd book on my own history and river of "fun" with Autoimmune Illnesses, and I intend to soon, if I can get to where I can sit long enough to do so. I have almost finished reading Stephen King's book "On Writing". He has some incredible ideas, and of course many I already know. I need a complete "block of time" even if that means weeks, to just write! Nothing else, if I can help it, but quiet time, where I can "bust out" the rest of the writing, then I can begin editing, proofing and so forth. I have no change but to do it all myself. I cannot afford to have a professional help with it, and I did a pretty darn good job with my 1st two books.

This 3rd on of course is so much different. It will be a compilation of my blog posts, my writing about these AI illnesses, and all of the other complications that go along with them... and my personal story, both glory and Lord awful times when I thought not being on this Earth would be better than all I've endured over this past many years... especially since 2005 forward. 

I know I need to get it out there for others to read, and hopefully show that they too can share their problems... people out there do care, even when you think they don't. 

So, as the days go by, keep me in your thoughts... lots of stuff going on with me right now. Some I cannot speak about much until later when things are more settled. 

As time goes on, I will be able to give more details about my life, and what is, is not, and what will go on, for my future. Of course, as I've found out through personal experience, as well as through the experiences of some of my friends especially on Facebook, we are never "guaranteed", what the future will hold. I was thinking about that just a bit ago while I was in the kitchen. In 2010, on Feb. 2nd, which would have been my Dad's birthday, I went to the ER via ambulance, sicker than I can remember... they thought it was my Gallbladder. Well, it came out, and I appeared to be getting better. Yet, within 10 hours or so, I was so ill, they feared I may not pull through. They rushed me via ambulance to Methodist in Dallas, where I stayed 6 weeks. They told us I had a "collapsed" bile duct, that my liver had a nick on it, from the surgery and it was pouring "poison" into my abdomen. I had tubes of stuff coming out of me for weeks and weeks. I didn't even get them out until much later after I came home. Honestly, I don't think they really ever knew what was wrong exactly. I was told by all of my physicians, including my PCP, they thought I would frankly, die... although I am still here, but it was a scary, very long 4 months or even more before I felt like I truly may live. I could not eat nor drink for something like 6 weeks. They fed me via IV the entire time... so we never know... a guy I know that was the "picture of health" in his mid 40's, was found by his wife on the floor when she got home from errands. He had a massive brain bleed. Turned out after having to remove a part of his skull to relieve the pressure, he had had a stroke... and maybe unable to move on his entire right side the rest of his life.

I just read where a friend on Facebook who has "RSD", and I don't know a lot about it, although I do know some... she is very young, and facing having her arm amputated today! It appears where blood may not get to certain areas due to nerve issues, thus it appears like she has the massive sores like an infection on her lower arm. So, they are taking her arm off partially it appears down below the elbow.

Another friend here I went to school with is battling cancer. She had it when we were still in high school! And she kicked its butt. Now, after over 30 plus years, it is back, and she is fighting daily with pain, from a tumor that is pressing on her sciatic nerve. 

That is just a few I can think of... My Dad basically went like of like that... had a knee replacement, and something just went terribly wrong... and he passed away in the hospital.... so we never know, from moment to moment what may happen...


The accident Jim had last year March 2014, who would have known an 18 wheel tractor trailer would have ran him over and now he is partially paralized from about his mid-chest down. 

Those again are just a few that I can think of now, and there are so many more of us that either have suffered like that, or know of dear family or friends, that within a breaths space... have gone through horrid and almost unbelievable health experiences. 


RSD - http://rsds.org/



Ankylosing Spondylitis -   (AS)
http://www.spondylitis.org/about/as.aspx