Another Week of Horror, severe pain, trying to BE A CARETAKER TO MOM, when I NEED a CARETAKER RIGHT NOW ALMOST MYSELF, LIFE, AND what it decides to pitch at us!

Once again things are not well with my Mom nor Myself. I found her in the floor again yesterday around noon time. I actually think she may have not "fallen" but more just slipped out of that rocker and down onto the floor from the way things looked.... anyway, I FINALLY by getting her to sit up for awhile, and her medications, and then getting her feet under her and her walker "steady" I got her up and into the chair... the lady that is over the PT portion of the Home Health came over and of course I had to tell her about this.... and as I told her, Mom got up, walked with her walker after she was there, she was able to talk fine, she had no bruises, she did NOT hit her head, and I saw no difference from her the day before... she seems to be "fine" one moment, and the next she has no clue where she is or who I am... 
so none of that changed. 

So, after that woman left, I gave her the rest of her regular medications, some Ensure, something to drink and tried to get her to eat, and she of course did not want to eat again. And besides all that she stopped up the damned toliet (I have no clue what she is doing) but she did not tell me until yesterday and claimed it had been that way for a couple of days... well in among the woman being there, me trying to answer questions, trying to plunge the toliet, I finally went and got some MR. Plumber gel, poured it in, tried again, and I got it partially unstopped... but I left it and told Mom NOT to use it at all, to let it sit overnight and use the potty chair by the bed... and today, it may go ahead and unstop...

I have a "small snake" that can go down into the toliet and I know it is not very far, because the sinks work fine, I used the washer etc... and only the toliet seems to be the issue... I may have to call a plumber but I know how much they charge... last time mine was stopped up but down below my "clean out" in the yard, I poured bleach in it for days, and it was tree roots that slowly can "seep" into the pipes and fill them... so little did I know I almost had it unclogged...so when he got there, he basically ran a bit of the hand auger through there, and hell it took him 2 minutes and cost me over 100.00!!! So, that is why unless I just can't get it today, I do not want to call a plumber, especially on a weekend.... So, I was totally exhausted, hurting badly, my own lower spine is worse, and my neck, shoulders, arms and hands throb, burn and hurt so badly, I can barely stand to sit here and type... dammit the hell I am sick of this crap... but I get a call about the time I pulled up to my home from Mom's and it was the "lady" I 'thought" had been at the house earlier... and she was "concerned" that Mom falling out of the chair "worsened" her condition... and as I told her, in the first place both myself, my son feel and the woman that was there, that she really did not take a "hard fall" - it was more she just slipped out of that chair... that I have been TRYING TO GET RID of anyway... she cannot get in and out of it, it rocks and glides... and she needs to not sit it in anymore... 

plus I threw out an old magazine table, that is so wobbly and old, she tried to "push" herself up on it, and I know also is an issue... in fact I threw it outside yesterday and told her it was NOT coming back into the house... anyway, this woman almost acted as if I was "not doing the right thing" with Mom... well maybe I am wrong, but I have been doing everything, and 

if I remotely thought she was hurt, or in any way had hit her head, or was "worse" from this "fall" I would have called the ambulance and took her out to be checked out... but she was NOT injured, not even a bruise and in fact once she was up off the floor, got up and walked around, and so forth, she told the woman she felt "okay" and that was no "pain" at all other than her regular "back pain" that has been there for many months now.,. so I took "offense" to this woman, not knowing what took place, what I see every day of my life, what I know goes on etc... acting as if I am being "cruel" or something... honestly home health care is a "joke"... other than the "aid" helping Mom by showering, washing her hair, and changing her sheets a couple of times a week, the other 2 really do "nothing".... so I am not thrilled... I thought the entire purpose was for them to spend up to 35 hours a week with her, and be there to take some of this off my back, where I don't have to be over there 3 or 4 times every day... it is taking a toll on me badly, especially this past week... I am physically in horrible pain myself now, and when I am complaining, then it is really, really HORRIBLE pain! 

SO, I have a QUESTION? DOES ANYONE KNOW MORE ABOUT "NON TERMINAL HOSPICE" or more of A PERSON THAT COMES IN AND DOES MORE THINGS SUCH AS STAYING THERE A CERTAIN AMOUNT OF HOURS A DAY? I am "wading" through the insurance to see what is covered, and what she "qualifies" for... but I MYSELF NEED A CARETAKER, AND I NO LONGER HAVE ONE, and me trying to be almost a "FULL TIME CARETAKER FOR HER AND MYSELF, IS TAKING ITS TOLL ON ME"... so if anyone knows someone here in Ennis that does that type of thing whether just "personally" or through a company would you let me know?

Awesome Article from the National Pain Report ON Treating The Patient Not the Label

 Terrific Article on National Pain Management - ON Treating The Patient - Not The Label

 

http://nationalpainreport.com/treat-the-patient-not-the-label-8829300.html

By Terri Lewis, PhD
Terri Lewis, PhD is a frequent contributor to the National Pain Report. She is a daughter and a mother who has witnessed chronic pain first hand. She currently serves as an Assistant Professor, Rehabilitation Counseling and International Programs Consultant at National Changhua University of Education in Taiwan. She originally published this column on Linkedin on January 17.



Follow on Twitter - for National Pain Report

@NatPainReport

@Tal7291

Chronic Pain Medications, Narcotics, the CDC, Public Comments and More information I feel you need to read...

I have to say, that some of this is very true! I do know just from speaking with my pain specialist, that there are many programs all doctors can attend, that are free, and it gives them the knowledge to give patients with chronic pain issues, the proper diagnosis, and then the proper treatments, including medications if needed. 

But WE will NEVER see a CHANGE unless WE as a NATION, as a COMMUNITY, come together as ONE, and demand THINGS CHANGE! I've learned a great deal from my pain doctor about things such as Medicare Advantage Plans, Medicare itself, why many doctors have issues taking some of those policies, or even Medicare... it took my own pain doctor over 2 YEARS and then he had to go in front of a judge JUST TO GET PAIN FOR 2 SURGERIES! Doctors do NOT have time, and they cannot possibly run a practice if they have to wait YEARS to get paid for a procedure... My pain pump surgery alone will be somewhere around 30,000.00 or so... Just the pump in itself, is extremely expensive... 

so if I doctor does a few of those, and then has to wait YEARS to get paid??? They can't possibly stay in business like that. Plus I have heard some doctors admit, one reason they do not give out pain medications is because they feel they are not "trained" enough... our newer physicians ARE now being trained in chronic pain, Lupus, RA, autoimmune illnesses, and that is a good thing. ALL physicians should know about these diseases, and about chronic pain... So, I believe that the CDC has some to do with it, but then I feel "Congress" and the likes also have their fingers in it, along with our "insurance, Medicare" and so forth... and the fact that WE have to stop Hiding our heads in the sand, and STAND UP AND TELL OUR STORIES!!!! It is totally imperative that WE STAND TOGETHER and make our voices heard. 

We have some great organizations out there, the US Pain Foundation​, Power of Pain Foundation just to name two of them, but they also NEED US to HELP them get the word out... that is the ONLY way we as patients, caretakers, family and friends, will get the treatments we need, under the right circumstances, and not have our physicians "frightened" to prescribe the medications their patients need.... many of us cannot AFFORD a "specialist".... And even Finding a "good Pain Doctor" is NOT EASY! 

Can you imagine walking into a "Pain Management Doctor's Office" that ALSO IS A TEACHING UNIVERSITY, to find out THEY do NOT "prescribe" pain medications, but they send a 'RECOMMENDATION" TO THE patients PCP to give them the medications??? now how stupid is that!!! Talk about nuts! Then WHY call themselves a PAIN MANAGEMENT CLINIC???? This just happened last week to a friend of mine, and I know of a doctor here, that is a "pain doctor" but he got "reprimanded" so he can prescribe "some medications" but nothing that would be "narcotic" in nature... so you go in, thinking you will get the help you need... and then find out he can give out other medications, BUT he cannot prescribe any type of narcotic, even though he tells you that is what you need!

Don’t Blame CDC for Poor Pain Care — Pain News Network

 

 

 

I cannot EXPRESS and IMPRESS on ALL with Pain Issues (Chronic Pain) PLEASE make your COMMENTS & STORIES KNOWN TO THE CDC!

I know this is like, what can "we" do? Well WE can do a great deal! I have watched MANY of us whether via Email, or standing on Capitol Hill MAKE A DIFFERENCE! In ARTHRHTIS, IN PAIN ISSUES, IN HEART PROBLEMS, IN DIABETES, you name it, it takes US to speak up, and tell our government and everyone what and how we are effected DAILY with illnesses, that are chronic and often horribly painful!

I've been trying to "peck out" my 3rd book, which is my own Journey with Chronic Illnesses, and all painful, Lupus, RA, Migraines, Joint surgeries and replacements, crumbling spinal issues, I need TWO MORE surgeries one again in my neck and one in my lower lumbar spine.. My internal "pain pump" stalled about 3 months ago... or more... BUT DUE TO ABSCESSES CAUSED BY RA MEDICATION (ONE INJECTIBLE) AS FAR AS WE KNOW.. and spent over 3 months with cellulitis, that turned into abscesses on each middle top thigh... the 2nd on sent me to a wound care specialist, of which I have been tramping to Dallas once a week now for 4 weeks to get it well enough to HAVE SURGERY! I have "oral medications for pain" but THEY CANNOT TOUCH MY PAIN PUMP! There is not enough oral meds they can give me to help just even take the edge off of my pain... thus my book GETS LONGER, AND I am often unable to sit here just to type it out! And it is already about 500 pages plus long... so you can imagine...

BUT THIS IS A SERIOUS MATTER! No matter whether you are a patient, caregiver, know someone with chronic pain, or just someone who cares about us getting the medications we need... please make sure you go to the link and post your comment...

Again here is the link and it is NOT difficult to do...

http://www.regulations.gov/#!docketBrowser;rpp=25;po=0;dct=N%252BFR%252BPR%252BO;D=CDC-2015-0112

And even thought we have until "January 13th PLEASE DO NOT PUT IT OFF... WITH THE HOLIDAYS, YOU MAY ALLOW IT TO FLY BY AND MISS THE TIME FRAME!!!

If you want to you can even write a letter and it will be taken also.... so if you need that information let me know and I will post the docket number, and the information you need to mail it in "snail mail"....

Pain Awareness Month and Suicide Prevention Month - Do We think about just how badly chronic pain can be and for some, almost to the place of not being able to live with it....

This is so well put! WE, many of us, with chronic daily pain, the kind that without any treatment would leave you in bed, on the sofa, and without ANY quality of LIFE!!!!! Yet, those FEW who choose to "abuse" medications, cause a ridiculous amount of questioning, hoop jumping, "looks at us like we are "addicts" " and even many that all of a sudden can no longer GET their meds... as she put it... to HAVE A LIFE  ... we do not use meds to "escape" from living... that in itself was one of the best ways I've heard to speak about the people that abuse medications. But those that do cause harm by their own abuse, and making life almost unbearable for those that do everything correctly.... just to as I say, and the article says to have "life"... NO PAIN medication EVER completely takes pain away.... it makes us "able to deal" with the pain better, when it is "less" than unbearable. I have an implanted pain pump that my Pain Doctor implanted in 2010... and we have "tweaked" the medication in it over the years, if need be. But, I still have a script for "back up" pain... maybe I am having more pain than usual from a weather change, or from doing something in my daily life that may exaserbate the pain at times. Yet, nothing takes it away... it helps me deal with what is pain remains... it allows me energy to DO my errands chores, go out for a day to have a bit of "off time" and so on.... if it were NOT for my pain medications, I would almost be to a place that it would be "intractable"... more often than not... and in fact, due to a lower back lumbar/sacral problem, there have been at least two times in the last 3 years that it was like I have NO PAIN medication at all.... In fact I even went through and had a talk with my pain doctor. All I wanted to do it sit in the floor and cry, the pain was so horrid.... I went that way for weeks... and we found the problem... and now due to this abscess I am still not able t0 have surgery... but at times even with what I have, it can be to the point you wonder if you are not just going to go insane from the pain.  So, each time I see or hear about how many "abuse" medications and all they want to do to make it almost impossible for us to get our medications, it just infuriates me... for ONE DAY I would like to "hand over" my pain to some of those that think it is all "bull" and let them walk in my shoes for 24 hours... I wonder how they would feel, when they awake to stiff, swollen, throbbing hands, knuckles, feet, ankles, hips, pain down my leg, severe headache from Lupus... and see how long they could "tackle" the pain without any help from medications... If you gave them a week, I bet 95% or more of them would be begging for relief..... And I have had several people over the years ask me how I "cope"?  How do I get up and around with the pain and chronic illnesses, the fatigue, the swelling in my joints the stiffness, the pain that does not matter if you sit, stand, lay down... it is just there,... and by "faith" and "hope" and taking ALL of my medications as I am instructed, and trying to stay as active as possible... helps me to cope... my writing, my blog, being here on FB, my activism, advocacy, and my Ambassador roles... the AF, WEGO, Lupus Foundation, IFAA.... all of those and more, that give me the will to know I must FIGHT not just for myself, but for others out there just like myself or even worse.... Rhia Steele​

http://nationalpainreport.com/pain-awareness-and-suicide-prevention-8827504.html

http://nationalpainreport.com/

 

 

After reading this article I felt compelled to share it. This is one of the MANY complicated emotions when you are dealing with Chronic Daily Unrelenting Pain....

"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...

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

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




 

When the Physicians Allow You to Hurt Like Hell - and play this "hurry up and wait" Ordeal - Intractable Pain....

I did not finish this BEFORE leaving the page yesterday, so everything I wrote after this initial post was lost. I had asked if anyone had one of these "discograms".... and if so was it as bad as what I am reading? It just seems like this is not a test to take lightly. Plus you may end up in worse pain than you already are. I went to my Orthopedic surgeon this week. He was the one that actually put my new right shoulder in and then done my 4 level neck surgery about two years ago. As awesome of a SURGEON AND DOCTOR as he is, he "patient repoire" SUCKS!! He "hates" an educated patient. I had written before that him and I have gotten into it, before he did my neck surgery. I had given him my own thoughts after doing a great deal of research, even on the "reverse shoulder replacement" and he just didn't appreciate "me" a layman, even attempting to let him know my thoughts on the situation. He basically told me I was "stupid".... and later on, after the surgeries were done and MOST OF WHAT I SAID, was TRUE about my situation, he had in his own weird way had to 'APOLOGIZE" for making it sound like I was stupid. I never got a total I am sorry, or apology, but in his own way, he kind of smoothed everything over. Anyway now I've found more information on "sacroiliitis.... that sounds also more like what is going on with me and my very lower back, almost at my tailbone, and then into both hips and traveling at times down to my knees.... I just did some research on it, after a doctor in CA had "tweeted" me about what I posted about my lower back and hip pain... I found out this issue often is looked over, and the doctors "miss" that this is the issue, and blame it on a lumbar spine thing instead. Well, as I've told both doctors now, I feel I have two issues.... maybe my very lowest lumbar vertebra and my S-1 -S-2 have issues.... BUT there is something going on with my hips themselves, or another issue causing the severe hip pain. He had the audacity to tell me that the severe pain I was having in my hips, no way could be caused by bursitis... or the like... which is bull... I KNOW I've had hip bursitis several times and it hurts like hell!!! Now here I sit, in fact I just tried the very "test" this doctor said to try in order to see if this is possibly this sacroiliitis or not. And both sides put me almost in a scream to try and "test" to see if that is the cause. So, now here I am NOT gotten any relief and in fact, I am WORSE TODAY!!! And I don't see my pain doctor until next Thursday. I am in tears with severe pain. It matters not if I sit, stand, walk... right now the sitting is the worst. But, if I go out and walk a bit, then it also hits me like a razor sharp ball of fire into my very low buttocks, and hips, then down the sides of both legs.... I cannot take much more of this crap.... I am almost to the place of intractable pain again..... Why is it, no matter how badly we hurt, it is always this "hurry up and wait" game with physicians????
I've done enough research through out all of my chronic illness and pain issues now for so many years, I could almost be a doctor myself... or a pretty good researcher....

Yet, this is beginning to be the end of how much I can take. I realize ANY of us are in all types of pain. Often we are in such an overload of it, we would do just about any and everything to stop it.

What do you do? We know that going to an ER with "chronic pain' is just about like peeing out of the back of a moving truck bed. We know that most of our physicians, want to do a billion dollars worth of tests, scans, injections, treatments, and all or none may work or not work. I have said over and over again, that no matter where they have ever done "CT Scans", or MRi's, EMG's, EEG's.... all types of nerve tests... blood work. and yes there is some thing that show up. Yet, only when a surgeon FINALLY GOES IN - that is when they see JUST HOW BADLY MY JOINTS ARE SCREWED UP!

I've been told that by several of my physicians over the years. So, again, I will repeat, since it is worth repeating, TESTS DO NOT ALWAYS mean they are TRUE AND CORRECT! Tests are usually as good as the person doing them, and then whomever does the reading of them...

A very good example just happened to me this week. I had a CT can about 4 weeks ago, on my lumbar spine. It did show some problems in my lumbar spine, and although not just HUGE issues, my pain doctor said it could be enough to cause the pain I am having.

I go to my Orthopedic Surgeon this week. He was "supposed" to have a copy of the CT Scan. Somehow, between me going into that building, and seeing him in his office, my CT Scan results suddenly disappeared. I KNOW it was there with the paperwork I brought in. I saw it, and I said it twice or three times... his office somewhere lost it, put it in another chart or something. BUT, He did DO regular X-Rays on my lower lumbar spine and hips. He could tell me MORE by regular X-rays about my lumbar spine, and so forth THAN THE CT SCAN EVEN WAS SHOWING... and He had NOT even seen the scan. So, that just goes to show, with a simple couple of X-rays, a physician that KNOWS what he is looking for, can sometimes find something before ordering other very expensive, more invasive tests! I thought he had been reading the CT Scan. Then he mentioned about possibly having one done. I said well I just had one 4 weeks ago and I brought it in with the rest of that paperwork. Of course NO he had not seen it, but it did see the problems. He began to tell me that due to the extreme amount of pain I was in, there was no way that my hips could cause the pain. I say BULL! When I was this bad before, my hips were injected into the bursa with corticosteroid and it worked, two times at least. 

Anyway, it went on to prove to me, in all honesty, when a proper physician sees some tests such as this plain X-Ray.... they can go by that and what the patient says, rather than order $1,000.00's of dollars worth of tests, that if not read correctly would not show how bad it really was.

So, I have tried just about any and everything to "keep my mind" off the pain... between baking, writing, doing emails, reading and so on... nothing is helping. Here it is Friday afternoon, and I have another week to put up with this mess.....

Could I scream????!!!!! YOU BET I COULD!!!!!!!!!

Sharing" Anothers Bloggers Post - and the Pain that we often fall short of talking about... that relentless endless, intractable PAIN

The link to the post is at :

https://www.creakyjoints.org/no-good-lessons-learned-hitting-ra-pains-rock-bottom/

It is from a "Creaky Joints" post...

RA pain’s rock bottom: NOT a ‘pain made me a better person’ story

 

and it is by: 

Kat Macfarlane

 

 I was so truly amazed with this woman's "honesty" about this type of pain. As I "crawl" through some of the exact same pain with my hips and lower back, and legs, I just want to scream, cry, shout, cuss, say everything my head is thinking, yet not want to offend anyone. So, I don't walk outside and shout, dammit the hell I HURT!! WHY Can't this just go away??? Why the hell do I have to live day after freaking day like this...... and so on... it is MUCH MORE Obscene is my mind for sure...