Tuesday, June 30, 2015

When "Radiology Reports" come in and say you had a "prior" laminectomy BUT you NEVER had LUMBAR Surgery~ - Really???

I have a VERY ODD Question for everyone.... Have you ever heard of someone having a test done on their lumbar spine, for instance as I did last Friday, AN when the Radiologist read and typed his his report, he says several times there appears to be "such and such" from a "PREVIOUS" laminectomy????? I have NEVER HAD LUMBAR spine surgery... NONE! So, was he SEEING something that could be "further damage" I have, that for some reason made him think I have had a laminectomy before? I've tried to think of a way to "google" the question, and just can't get it worded where I can find out why this might be. So, if anyone has ever heard of this. or knows anything about it, feel free to post. I GOT my reports from the discogram done on Friday. My Orthopedic surgeon has NOT gotten back to me, but the reports were already up on my personal "patient portal" this morning. So, I could sign in, see and print them. So, I already know what the tests say, but this business about him saying something several times about a "prior" laminectomy has thrown me for a loop....   ( can also be spelled laminotomy)  and can mean "partially removed" or "fully removed" depending on which was done... YET NEVER HAD I HAD THIS DONE???


More later.... but if anyone has an answer... or how to look this up so I can get an answer... feel free to post, post on my Facebook page, or send me an email... I am so curious as to "why" it "appears" I've had an operation on my "lumbar spine" when I never have....

I went ALL WEEK LONG, well since Monday KNOWING that my Orthopedic surgeon HAD the "discogram" results. I had "pulled" them myself on Monday afternoon, from my "patient portal" and printed both the discogram and the CT afterwards so I could read more about them.

FINALLY yesterday   REALLY??? I get a call from his office! (About time Huh)? So, of course he wants to "go over" the results with me... I can fairly well guess what that will entail. If what I am reading is how I interpret it, I am sure I will be going through at least a "1 LEVEL" "fix" between my L-5 and S-1 discs... so that maybe actually "2" not sure how they were looking at it.

Well, so happens Mom has an her appointment with Him next week also! So, I asked if there was anyway, they could fit me in either before or after her.... well some times things actually DO work out! Unless something changes he can see me right after seeing my Mom, on that same afternoon..... YES!!!!!!!! What a thrill... not of course getting to the results, for either of us, but at least NOT MAKING 2 TRIPS to thSAME DOCTOR in DALLAS in the same week!

I am still quite in a quandry about this "prior" lamenectomy thing. My suspicions are either since I had the CT back in early May, I believe, due to the osteoporosis, "something broke off" thus creating it to appear I had a "prior" removal of that part in my lumbar spine.... either than or the guy is a total nut!! Which also could be true!!! I'll keep you posted here and on FB... I appreciate as always the kindness I receive from so many of you.....

Fingers crossed that IF I DO have to have SURGERY, it will be more of a "micro" thing, without a huge ordeal of very invasive operating.... but time will tell......

More Great News from the AF and FDA - truly making headway!

 

Awesome News Once again from The Arthritis Foundation along with the FDA!

 

 

http://blog.arthritis.org/news/fda-osteoarthritis/



Monday, June 29, 2015

Ankylosing Spondylitis, Spondyloarthritis, Axial Spondylitis, AI, Hip,Lumbar/Sacral Spine Pain, Surgery, and Tests, Discogram

This comes at an EXTREMELY important time in my life as of now. I saw on my orders last week for the "discogram" that "Spondy" was also what my Orthopedic Surgeon felt was a part of my issue. I already have severe osteoporosis, which shows in my lumbar spine, my hips (both), and then in my "femoral" portion of my leg. 

Honestly, I didn't know a great deal about Spondylitis, Spondyloarthritis, or even Ankylosing Spondylitis, until lately. Of course I knew it is an autoimmune disease, and knew some things about it, yet, not until I began to have the very severe problems with both hips, especially the horrid pain, I can't sit for long, or walk for long... many things do really make the pain much worse. 

Then I began to look a bit into it, and mentioned it to my Orthopedic Surgeon. 



This in red represents my own DEXA scan (a 2nd one) and the results of what is shown to be severe osteoporosis.

DEXA Scan Results for myself in 2013

Summary :
 
Osteoporosis in the lumbar spine, femoral neck and total hip. The
bone density at the spine was overestimated due to degenerative
changes, as suggested by the significant discordance in the
density of the individual vertebrae.
Area BMC BMD T T% Z Z%
L2-L4 43.92 33.73 0.768 -2.8 71 -1.8 79
Total Hip 34.44 21.84 0.634 -2.5 67 -1.9 73
Femoral Neck 5.34 3.06 0.573 -2.5 67 -1.5 77

Comments:
DXA of the lumbar spine (L2-L4) reveals a bone density of 0.768
g/cm2. This value is 2.8 standard deviations below the mean for
young adults, and represents 79% of the mean density for
patient's age. Femoral neck bone density is 0.573 g/cm2. This
value is 2.5 standard deviations below the mean for young adults.
Total hip density is 0.634 g/cm2, a value that represents 2.5
standard deviations below the mean for young adults. Hip density
represents 73% of the expected density for patient's age.

___________________________________________________________________________________

These numbers show my hips, lumbar spine as talked about and femoral neck bone all show severe osteoporosis. Thus this could be also associated with spondyloarthritis, axial, and so on... As horrible is it is to know I am "shrinking, now by almost 3 inches in the past about 5 or 6 years... and knowing a fall, or sometimes with severe forms of this, you can actually do nothing but walk across a room and a hip break, or the compression fractures are usually a huge concern, which is one reason they are considered about anyone "shrinking" We all do to a certain extent as we age, but this is different for sure. I was happy to see this article and wanted to share it with all of you. 


 http://www.medpagetoday.com/Rheumatology/BackPain/52341?xid=nl_mpt_DHE_2015-06-29&eun=g773630d0r

Sunday, June 28, 2015

CURE CLICK - "Clinical Trials" can be "simpler" - Lung Cancer, Heart Disease, Severe & Mild Asthma, Prostate Cancer - more to follow

  



Lung Cancer




Severe Asthma


Heart Disease & High Cholesterol



Check out the complete catalog of clinical trials available on TrialReach

 

 

Want to know More about "Cure Click"?

More About Cure Click

 There are DOZENS of different graphs, charts, information, video's and more! Please feel free to let me know if you would like more information!

Friday, June 26, 2015

NEVER HAVE A DISCOGRAM if you can AVOID IT!!!

Gosh, talk about the test from HELL!!!!!

I am home now though... and through... just HOPING they FIND the problem... I know I just cannot fathom NOT finding something... so I shall see... they did 4 levels...


and those needles DO NOT FEEL good and when they put pressure in them with the dye that is even worse.... anyway... awaiting the results and I hope that is early next week... I HATE having to wait for test results...

by the way NO SEDATION, NO PAIN MEDS nothing... I knew they needed you Lucid enough to be able to tell them about the pain no pain where and so on... but usually they at least give you a mild sedative to help you relax.... long story... I shall tell more later... I am off the to sofa the rest of today, and maybe a bit tomorrow...


oh by the way I noticed "ankylosing spondylitis" was actually "one" of the diagnosis was that my Orthopedic surgeon had down... even though he "blew me off" when I asked when I saw him, but he did have it in with my diagnosis!!!!



http://www.mayoclinic.org/tests-procedures/discogram/basics/definition/prc-20013848

My Facebook Post about this Ordeal!!!!




Okay guys and gals... just a quick update!! FIRST OF ALL - NEVER have a DISCOGRAM if you can POSSIBLY AVOID IT!!! No "sedative" at all... no IV, no even pain meds when they were through... and he stuck needles in FOUR different places in my lumbar/sacral spine!!! It hurt like hell, and even hurt worse taking them out... needless to say, I PRAY we get some "positive" news... so I can move forward and get out of this horrid pain.... ALL that you read about these things and MORE are TRUE!!! BUT, of course that is the purpose... to inject that dye into the places the doctor deems causing the problems, THEN the dye pressure gives you either "pain" like you have, or MORE pain, or even a "different" pain... or sometimes no pain... thus it is strictly a diagnostic tool, so you have to be "lucid" enough to be able to tell them what it "feels" like, BUT some of the docs at least give you a bit some type a sedative, so you are at least relaxed a bit.... anyway, it is over and done with NOW... hopefully I will know something next week. In fact my Orthopedic doctors nurse actually called me while I had it done, and so I called her back to tell her yes, I just in fact finished it and was leaving the hospital... I was supposed to already have had it done several weeks back, but with illness, flares and so forth I had put it off. So, I HOPE they FOUND something!!!!! The last thing I want to hear is they FOUND NOTHING.. that would suck... I am off to go back to the sofa and rest for the day with the pups.... and will tell you more later when I am feeling a bit better...
Here is a link to just one site about this....

Thursday, June 25, 2015

Tomorrow is THE DAY (I dread)!!!! Discogram on lumbar/sacral spine....

I've said a bit about this here, but I have not went into lots of details...

About  months or more ago, I began to have a huge issue with severe pain in both hips. I did notice it was a bit painful kind of at the last vertebra on my lumbar/sacral portion of my spine.

I still thought it was my hips. I've had to have them injected a couple of times before with corticosteroids to calm down bursitis, and the like.

But, I had to go to my Orthopedic Surgeon that done my shoulder replacement and then my 4 level neck surgery a couple of years ago.

Due to insurance changes my former insurance would pay the local Ortho Docs, but they are not taking my newer one. I had already had this being "diagnosed" with my Pain Doctor. In fact he did epidural injections in that area.. and for about 3 days, it felt better... and then it went back to severe and now I can barely stand the pain. In the past two weeks, I guess due to ALL I've been trying to get done around my home, from getting the lawn mowed (I tried to "weed eat" part of the front where It was so tall.  My neighbor that usually mows it I guess was working a different shift and had not been home to mow mine nor his. Well, the weed eating did not help my hips, bu it did knock down some of the taller grass/weeds...

Then I moved all of my furniture around in my bedroom and some in my living room, took down an old desk, hauled it out front to get rid of it, along with a couple of "Mac" desktops. They probably needed power supplies, but I just didn't want to mess with trying all of that, and then the hassle of selling them. So, they went quickly, just like everything else I sit out there. I put a free sign on something and before I can come in the house good, someone always gets is quickly... great for me... no having to try and have it hauled off, or try to take it apart enough that the trash will pick it up etc...

So, between all of that, trimming trees, and gosh you name it, I've had been doing things  I really should NOT be doing but someone had to....

Anyway, I face a discogram in Dallas in the morning (Friday)... we are already pretty sure what it will tell.. I imagine that there are either compressions fractures due to the osteoporosis... and I know some slipped discs, plus I have something kind of like "scoliosis" My spine in that area is "tilted" ...

So, everyone keep my in your thoughts - my son has to drive down here in the early AM, I have to be in Dallas at the hospital by 7AM and I've read several things about these and just about every thing I read, one tells it this way, and another tells it the other... I will add a couple of links below. Right now I can barely stand the pain, just to sit in my computer chair. It makes my hips again feel as if they are on fire....

http://www.allaboutbackpain.com/html/spine_diagnostics/spine_diagnostics_discogram.html


http://www.ainsworthinstitute.com/discogram

https://www.cedars-sinai.edu/Patients/Programs-and-Services/Imaging-Center/For-Patients/Exams-by-Procedure/Interventional-Neuroradiology/Discogram/Discogram-Procedure-Information.aspx

Wednesday, June 24, 2015

PAIN! Pain and More Pain - My Hips, my lower back - I am trying to do everything I can myself at my house but these hips are just bad!!!!

RA? Lupus? Spondylitis? (ankylosing spondylitis) HLA-B27 "genetic marker",  Sjogren's? and everything else to go along with them!!!!


WELL IF MY HIPS AND LOWER BACK WERE NOT BAD ENOUGH, I spent my "EARLY" MORNING (ABOUT 7AM) this morning, having to "weed eat" some of my front lawn. It has gotten so tall, I was in fear to even walk though it... I feared with all this rain, snakes, and I hate those things... so, since for some reason all of a sudden, the guy next door, (that ALWAYS) helped to mow the yard, has not even looked at me, much less spoken, or even mentioned my yard. My back is as bad, but my lawn mower is also broken (the pull rope is broke) and I did find the manual a moment ago, so I may get that fixed. BUT, honestly I am NOT supposed to be "weed eating" or mowing especially... not after all of my surgeries etc... and my back and hips are to where I can't sleep at night, they hurt so badly, My Mom and I went to have blood work done yesterday, and it had to be "fasting" so we went early, and then the other labs that my Rheumy wants done BEFORE I can even think about trying the Zeljanx, was supposed to be done there, they had faxed over the orders over a week ago, and I get in, and guess what NO ORDERS,.. so I got on my phone, called and the woman said she would pull it and fax it immediately. Well, Mom and I both already had the other labs finished and "still no orders"...

SO NOW I will have to go back. I even had the Rheumy office call me yesterday evening and said they had faxed it THREE times... well that is just about how my PCP is... they put things on a "desk" and then it does not get into my chart, and now I have to go all over again, and I am a very difficult stick.. so he got a vein 1st try yesterday.. it would have been the perfect time to get all of the blood for ALL of the labs!!! BUT no orders... so I know I am having that discography done Friday early morning. It is about an hour away, with traffic of course up all the way in almost North Dallas at Medical City Hospital. So, that means my son has to meet me very early, and we will take my Mom's car. His truck is so far off the ground, I have heck getting in it after having anything done like this. So, we have to meet in time at my Mom's to get to Dallas and to Medical City by 7AM Friday Morning... LONG DAY for both of us... because he lives up close to Dallas and has to drive down here, get me then drive me up there... I could go myself, but they will I think put me under "twilight" at least for this procedure, so I won't be able to drive myself home.... I didn't even get but about half of my yard cut down enough, and I had to stop.. the sun was coming up over the trees and I sure as Hell do not need another LUPUS FLARE!!!

So, now my front yard is "half chopped down"... me and the weed eater have heck... it is not all that heavy, but my arms are so weak after surgeries and so on, so they were like "jelly" by the time I got a bit over half of the really tall weed mess down... I am so in a pissy mood... I am so pissed that "someone" else wanted ALL of this, home, lawn, wanted to "remodel" and now who is stuck with it half assed remodeled and now going to have to do as much myself, and then I guess hire the rest out... and I guess someone thinks I am "rolling in the bucks"... NOT!!! REALLY????!!! Plus I am sure just like the injections a few weeks ago this trip Friday will be 250.00 my co-pay... I got to thinking the other day and thought, well, I can power wash the house, and get windows redone, and paint the back bedroom... and paint part of the outside... and then get someone to lay the floors where I need them... bathroom, kitchen and finish out my laundry room.. but I still need my lights and a fan finished as far as the electrical part... they are partially done, but SOMEONE never finished those, nor even "mudding" the bathroom... and I can't do "mud"... I mean sheet rock mudding... lots I can or used to be able to do... but some of this is beyond my body's limits for sure.... so needless to say, I am in a pissed off state of mind, about this entire ordeal... but it will get done one way or the other... because I DON'T GIVE UP...

Tuesday, June 23, 2015

Early Symptoms of Autoimmune Arthritis Investigation - brought to you by the International Autoimmune Arthritis Foundation!







It took 18 months and over 3500 hours. It required online educational courses in research methods and data analysis in addition to private mentoring from a lead research consultant. It needed cooperation from our friends at the Spondylitis Association of America, Lupus UK, Sjögren's Syndrome Foundation, and International Still's Disease Foundation to serve as Nonprofit Organizational Experts on symptom reporting. It required patients with RA, PsA, SLE, Sjogren's, Ankylosing Spondylitis, and Adult Onset Still's Disease to see if they qualified to participate and, if so, donate 60 minutes of their time to report their disease progression from onset through 24 months.
It required patience, willingness to learn and grow, and the passion to make change in the delays in detection, referrals, diagnosis, and treatment. But we did it.


The 150 page Early Symptoms of Autoimmune Arthritis investigation into the true early symptoms of 6 diseases*, as reported by the patient and compared to current symptom lists published by the ACR, NIH, National Library of Medicine, and Mayo Clinic, will be available for you to download on July 1st from the IFAA website. The results from this investigation will be used to create new, updated Early Symptom Patient Models per disease and by group.


A special thank you to Janssen for making this possible.
*AOSD FULL analysis will not be included in this publication (although much of it will) as the original recruitment was too low for 95% scientific accuracy. The number has now been reached and AOSD will be added to the analysis by the end of 2015.



 Early Symptoms of Autoimmune Arthritis Investigation

Below is my post to the IFAA!

I know that this took an astronomical amount of work from the IFAA and all, plus many more including Janssen that helped to make this all possible. In the hopes that this will be quite an eye-opener for everyone that is involved with Autoimmune Arthritic Illnesses, along with all of the other AAI's that can go along with the "Arthritic" ones. I am proud to say that I've been a part of this incredible bunch of ladies and men. It took many, many long days and nights, to get all of this in order and put into the publication that it is coming in. My hopes are that this will bring even more awareness, more education, more "early diagnosis", more Advanced and Early, plus "aggressive" medications, and treatments; because up until now, the many, many of us that have been through the "fires" of one doctor after the other, one diagnosis after the other, one medication after the other... which may go on FOR YEARS... only to find out something else is causing the problems, or you may have NOT been as "ill" had you gotten proper care from the beginning... as a woman, I know the spill, about, oh, it is your hormones, or you are too "young" to have joint problems, or you are just stressed out... and this from Physicians.... that are supposed to be "specialists"... THEY need EDUCATION also in many ways... so I say again CONGRATULATIONS IFAA!!!! What an incredible feat you pulled off

Rhia Steele


Chronically ill, chronic pain, and how LIFE can just be absolutely almost unbearable when you feel too bad to deal with it!

I don't care what anyone says, EVERYONE has those moments, days, weeks, and so forth... that things just DO NOT go RIGHT! Yet, when you are dealing with all too often Chronic Illness and Chronic Pain, some of life's bull, can be totally the reason some people just totally "lose it".... I know we wonder when someone "hurt's themselves", or they may just "go off the deep end" and rant and rave about something, or they "take off" for the day, or for a couple of days... or any number of things that we do to try and keep from going completely BONKERS, in life, in illness, and in pain... then add in the STRESS that complicates everything it seems, and it is a wonder that ALL of us are not in the "nut house"... thus this is one reason that I "rant and rave" in my blog and in my writing... some days you just have to PURGE all of that "ugly mess" out of your mind and heart. Everyone has their own ways... mine is to "write it" "say it" and then I am "free" what those "ties" of stress that bind...


AM SO BURNING MAD I could just about SCREAM to the MOON and Back!!! After THREE times of trying to get order for blood work over to my PCP from my Rheumatologist, I go this morning to have other blood work done for my PCP, and they tell me "they do not have the Rheumatologist's orders for the blood work!!!" SO, I go outside, call their office and gave the the fax number. They were going to fax it right then. I go in and for the 1st time he gets my blood the FIRST stick!!! BUT, they claim they still don't have the Rheumatologist orders. So, we get my Mom's done, and get my other finished and still they continue to tell me they didn't get it. So. NOW I've had to email my Rheumatologist again, and I KNOW they faxed that paperwork. My PCP and those girls in the office are idiots. It's probably been laying on someone's desk there now for a week!!!! So, NOW I have to make another trip, and no telling how my veins will act. One time they do great, the next they suck. I am supposed to go have the discography done Friday! So, I don't want all of my veins bruised too badly, then they have hell starting an IV!!! So, right now I am ready to blow more than one gasket. Then EARLY this morning, I get an email from "a person" that made me so mad I called them even though it was 2 HOURS earlier than me... so about 5 AM "they" get my call. After chewing "them" out via email, I was so HURT and felt so damned betrayed, after putting my heart, mind, body and soul, in a relationship for 13 years, and I GET BLAMED for it not "working"... I CAN'T fathom how someone who freaking did things that HURT ME, can so easily FORGET, ALL THEY DID OVER THE DAMNED YEARS... but I am THE ONE TO BLAME... OMG, I am so tired of being walked on and wiped on like a damned doormat... LIFE is NOT easy! PEOPLE disagree... that is PART OF A RELATIONSHIP... NOTHING goes COMPLETELY SMOOTHLY... not when illness, accidents, family... everything can't be PERFECT, but apparently, someone thinks YOU NEVER ARGUE, YOU NEVER HURT someone's feelings, that it is some FAIRY TALE!!! Lord why the hell I ever even tried I don't know... you would THINK I SHOULD HAVE LEARNED MY LESSON!!! But, I WILL NOT BE USED FOR A damned door mat anymore.


and continued....

PLUS I completely changed my entire bedroom around yesterday. I am "parying for it today" though... my lower back and hips are on fire they hurt so badly... then the blood work was "fasting", so Mom and I both went... so I had not eaten or had anything but water since last night... and then Mom has such a terrible hip problem, I finally got her to buy a cane today. She can't put any weight on that hip. I am calling my Orthopedic Surgeon who did my shoulder and neck and getting her an appointment. There is NOT ONE Ortho doctor in our town or any closer that takes our insurance anymore... so she has to go to Dallas anyway, she might as well see the best.... I fear if an injection does not work, she maybe facing hip surgery.... we may both be down with surgery by the same doctor ... if things don't get better... So, she wanted to go to Wally World and I took her. I needed some really very heavy plastic... I am trying to get the place fixed where my dogs are paper trained. My house is not as level anymore, it always moves around, that is TX soil for you. This house was built in 1950 and it STILL SETTLES, depending on the weather, and time of year. One day you can't open a door, the next it won't stay closed... it sucks... so I took her out there, and I knew her hip is bad by the way she was walking, and when she said she would buy a cane, I really knew it was bad.... so I am home, had to take my meds, give the dogs their meds, I still have not eaten, and am trying to get my "orders" for that damned blood work to me, so I can get them done. They won't pay for the Xeljanz (insurance) until I have the blood work done.. so between crappy weather, and a crappy life mess at the moment, and now hurting like hell, I am ready to just throw in the towel, wash cloth, kitchen sink, and the baby's bathtub with the water.... out the danged front door and say to hell with it all! LIFE SUCKS and PAIN SUCKS WORSE!!!!

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...

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