Fourth of July Already here, Time flies by too quickly, Cervical neck ongoing getting well over surgery, lumbat/sacral surgery, osteoporosis,bursitis.RA,osteoarthritis, and living....

SUNDAY ALREADY! SEEMS IMPOSSIBLE HOW THE DAYS, WEEKS AND MONTHS ARE FLYING BY SO QUICKLY. I am so "bored" with everything. I did put up my window "cling" that looks like stained glass. I love it, found it when I first moved into this house and put it on my front windows. It has been there about 10 years or really I guess more like 11 years, and it still looks awesome. So, I decided to put it on more windows, especially those that face where the sun comes in especially in the evenings. It looks wonderful and comes off easily, never fades, and does look like stained glass. I have 3 brand new mini blinds, that I've had for weeks for the office. One of mine was just about to come to pieces so I ordered all three new, so they would be the same. The others were old and getting to where even trying to wash them would be nuts. 

The less expensive ones are much to difficult to try and wash, and it is less hassle and cheaper to just buy new ones, since these have probably also been here 10 years or more. Right now after the rain from day before, and the cloudy weather over the past several days everything is so wet, between rain and dew, it's hard to get outside. I thought about going over to the walkway the city built buy one of the small lakes, not far from me... I broke down and bought new athletic shoes, Sketchers, a couple of weeks ago to walk in. I have some but they were really not enough support to walk very far in, so I broke down and bought better ones since I really need to be walking as much as possible. But, my street is so damned bumpy, and narrow, it's difficult to walk down it, and not get ran over. 

People run the stop sign right here at my corner one house down from me, and it's a wonder someone has not killed someone as fast as they drive down this street, especially with the kids out of school and the ones on their bikes, that are too young to really be riding out there with no parent supervision, but I see it all the time. A week or go, I looked outside and one little girl, about maybe 8 to 10 was riding right down the middle of my front lawn!!!! I was so pissed, and stepped out and told her I had better not see her, nor any of her friends riding through my lawn again! Parents don't watch and don't care, they just let them do as they please. It was so rude, and I told her, don't you know it's rude to go through someone's yard without permission? She just stared at me, and finally rode off. 

Anyway, I am not sure about the whole hip and thigh pain. I am thinking now since "both" hips have pain in them, and almost in the same spot, my left one I can trace the pain in it... and I think I may have either bursitis in both of them (which I have had before I broke the right hip) and have had them injected before, a couple of times. In fact about 4 years ago, I did have severe pain with both of them, and my orthopedic surgeon at that time, did inject the both of them at the same time. A bit later, my new Orthopedic surgeon, who does my neck, and did my right shoulder replacement told me it is my lower back making my hips hurt, and L-5 and S-1 and bursitis may or may not be the problem. I surely don't look forward to any other spinal surgery, especially lower spinal surgery, since so many horror stories come out of back surgery. 

But they have improved their process, the way the do the surgery, and what they have including "artificial discs" they can put in place of discs that have ruptured. That is what they did with my neck in the first surgery. One of the levels, he put a disc in place. The other are "fused" with cage and chips of bone from the bone spurs I had, rather than using artificial materials, or donor bone, they try and use your own, even if they remove it from a hip. I read they can do that, but with me having such severe osteoporosis, I imagine they don't take a chance of getting bone from any place else on me. Of course after the fracture to the right one, they would not touch it, but my issue is after reading, I am wondering down the line if I may have to have a total hip replacement, where he repaired it with the gamma nail and screws. I've read and that maybe what is already happening, that hip is developing arthritis in it, after the fractures and repair. 

So, between bursitis, which can even be "infectious" where they have to drain it, and probable arthritis, that could be what is causing pain in the right one, and my left one maybe effected by either osteoarthritis, or even the RA, which is what my 1st cousin had, RA that caused him to have finally both hips totally replaced. I've been trying to keep up and keep busy, but when you cannot or should not do things where you have to hold anything over your head heavy, etc, it's difficult to find things to do.... after having my neck in the brace for so long, I have come to realize how much you do that effects you having to move your neck up, down, sideways, and every which way, from driving, to putting up these blinds, to even sitting at the computer, potting plants, and even laundry, cooking, cleaning... you name it, even taking a shower, or like me wanting to have my hair cut, she usually has to have me bend my head forward to get it short and cropped in the back, but I need it cut so badly, so I may have to have her improvise, cut it and just do as much as she can without me having to bend my head forward etc... I don't think I can go another week with it as crappy as it looks. 

Honestly, I've almost thought about "razoring" the top and sides myself. I do usually when it is cut very short, and she razors it. So, I've thought about using mine and just get the horrible ends off of it, until I can see her. I just don't want to "chop" on it too much and then she can't cut it like I want. I let it grow out again longer, but now with it so hot, I like it really cut short... where I can put my "goo" on it, spike it up and go... no brushing, hardly no blow drying it, by the time I wash it, towel it off, and run my fingers through it, it's dry and I can put my "goo" in it and go.... no fuss no muss... I love it that way, and the way it is now, I am really better off doing it like that, especially if I am having more surgery in the next few months... I am really not sure what the hell I will do about my lower back... when it gives me so much hell, and I am in so much pain, I want to sit in the floor and scream, cry, and feel as if I am going insane, I want it "fixed"... but the idea of a lower brace, probably much more "time healing, and getting it well enough to do things," then I want to "back off" no pun intended, and say I will just put up with it... but I also know it won't get better over time... it will just get worse....

When Lupus, RA, & Osteoporosis is taking over Trying to Feel Like Catching Up on my Own Health Issues, Surgery Upcoming on my Cervical Spine and Lumbar spine soon, and everything else that "can happen, will happen" to me

I have been gone for the most part off and on, and also doing a great deal of stuff around the house the past several weeks. 

I have also been battling being ill myself, not knowing whether it's been another flare with the Lupus and RA, or everything else, from a stomach bug, to allergies, and this ever changing weather is NOT helping us either. So, rather than go through the entire ordeal, yes, I've been under the weather since before Thanksgiving, off and on, with a probable Lupus flare, but my cervical spine issues, and my lumbar/sacral spine problems have came to the place I can no longer put off surgery. 

SO, FINALLY YESTERDAY, I did go to Dallas, to my Orthopedic Specialist, to tell him what has been going on, and that I've developed "more symptoms and problems, especially when I was having to take care of Mom, I had done something back then, and also outside trimming trees etc, that BOTH my neck and my lower back need HELP! "HOPEFULLY" HE WILL be able to get me in there, scheduled and get one of the surgeries done before the end of the the year. 

Not that I am looking forward to holidays and surgery, but before all of the new year deductibles and so on roll over for insurance, I feel now is the time to get at least ONE done, and then face the other early next year. I know he thinks we need another CT Scan and I wanted to tell him NO, because I've have way too many, they are expensive, he SAW my NECK DAMAGE ON A REGULAR X-RAY last time I was in there, but I also know due to insurance and their bull, plus he can see if here is NEW damage and be prepared with the right things he needs in surgery to "repair" whatever all is there, so wish me luck. 

I do not like the WEATHER BUT we have been fortunate up until now NOT to have horrible weather as far as cold, dreary mess, and that makes it harder to have to go to Dallas for surgery, and then get home. I am hoping my son will be able to take me, and he said that he is now where he can take me, so if not I maybe calling on one of my close friends to take me up and get the surgery done. It will be one that I should go home that same day, IF it goes as planned and he does not run into further complications once he is in there and can tell what all is happening. I will keep you posted as I can and let you all know what is happening.... Rhia

Another Week of an Elderly Mom, some type of "Dementia", me trying to cope and deal with her, and all of my severe pain, and missing surgeries, and doctors appts because she is ill....

I am MOSTLY on the sofa today I HOPE! This has been another week of hell... to say the least... Mom "seems" to do better on the days I go over there... but yesterday I was trying to get my yard down enough so with this rain it would not get any taller than it already was.... so between my cordless weedeater and my cordless lawn mower it was even hell with all of the weeks and it still being so wet from the humidity... I cleaned out from under my mower at least 4 times trying to clear that mess out from under it... but I got "most" of the tall stuff back and front down for now... I am paying for it today... and have been paying for it all week... I NEED THIS NECK SURGERY and now I KNOW I HAVE TO HAVE THE LUMBAR/SACRAL surgery also... I keep "putting them off" because of Mom mainly... until I know that the Nurse, and the Home Health is going to go over, and she is getting one meal brought to her daily... I feel I cannot go through with the surgeries... I feel she does NOT even grasp that I will be "down" for at least 2 weeks, I should not drive, even though I will probably have to around town... after a week, but that means I can "barely" take care of me and the pups, and I will NOT be able to lift anything heavy, or be taking lots of stuff over to her, or be able to go over there every day, for at least a week or so... after that, then I still will be in a neck brace at the very least 6 weeks maybe longer because this surgery calls for taking OUT all of the "hardware" he put in , in 2012 and redoing it plus the new issues with discs compressed... so then he also is calling for some type of "bone growth stimulation" which I gather he means on the outside, I will have to wear because due to my osteoporosis, the RA and Lupus, he fears I may have further issues with my vertebra and getting all of that to fill in and heal... which takes 6 months or longer for "my own bone fragments" to heal in the "cage" they put in and if they have to use "other types" it may take longer.... I rescheduled the cervical neck surgery for May 4th and unless something horrid happens I HAVE TO HAVE THIS SURGERY NO MATTER WHAT! I will be "well enough" to go down to Corpus Christi to what my Granddaughter graduate, and hopefully stay a day or so, then come through and stay in San Antonio for a night, and see the Riverwalk before heading home... I will have to see how well I am feeling.. with the 1st neck surgery I felt GREAT even before I left the hospital, all of the pain in my shoulder blades and down my arms was "gone" almost right after the surgery, I can only hope I do that well this time... that has been 4 years ago, and lots can change with a body in 4 years.... anyway, 

Mom is NOT EATING! In fact, I got PISSED at HER yesterday! I told her if she continues to LAY IN BED, NOT EAT, NOT DRINK (AN NO CARBONATED ANYTHING), and NOT think she can live off of Ensure, and get back to eating some, supplementing it with the Ensure, and begin to move around some, that her "bowels" (which is what she keeps griping about) were NOT GOING TO DO RIGHT! Plus if she continues to NOT TAKE HER MEDICATIONS, she will NOT be well, or feel well. So, I MADE HER TELL ME SOMETHING SHE WOULD EAT... and I went and got the chicken strips (although fried anything she would put in her system), mashed potatoes, and a roll... plus I brought her LARGE GLASS OF UNSWEETENED TEA, and told her she needed to drink ALL of IT! She is also "dry and dehydrated which does NOT help either... she cannot expect her stomach NOT to hurt, if she puts NOTHING in it, and for her intestines to "work" without getting up moving around some and taking her proper medications... when I ask her if she too her meds... 

I get this answer "Well, I took something"... NO she took NOTHING of her regular daily medications, they were in the pill box on the table! Plus she is drinking milk, which Mom NEVER drank milk or ate much of anything with "milk" in it.. SO I TOLD HER SHE COULD BE LACTOSE INTOLERANT" and may not even know it... because up until the past month or so, she never ate much cheese, never drank milk, never ate much of anything other than breads, bisquits, etc... other than that not much dairy stuff... and if I take her to a doctor he will basically TELL HER THE SAME THING I AM SAYING... she has to EAT some, TAKE HER MEDS AS SHE IS SUPPOSED TO, get UP and MOVE, and quit laying in that bed 24 hours a day... and LAY OFF THE COLA'S AND THE MILK... 

I told her to drink water, drink "green tea" some, but nothing dairy, and nothing carbonated at all, no coffee, nothing with caffeine in it, and continue to drink the ensures but EAT WITH IT! Anyway, when I left yesterday afternoon, she had taken all of her medications, she DID EAT SOME, and of course she can't hold a lot at a time, because she is NOT eating.... and she was drinking the tea, I left a pitcher of water and a glass there, and gave her one pain pill. 

Then I told her after that pain pill begins to kick in to get up and quit laying down all the time... to at least move around to the kitchen, get up and sit in her chair in the living room, but MOVE AROUND SOME... and today through the next several days our weather is supposed to be HORRIBLE, THUNDERSTORMS, FLASH FLOODS, HAIL... no telling what from today through at least TUESDAY.. so I told her I was NOT well either, I've been in pain, unable to sleep, my stomach is not the best either, but mine is nerves and stress more than anything, and the nurse and the aid are supposed to start next week, but I prefer they not come until our weather is a bit more stable after Tuesday or so... I will NOT get my car out in possible hail if I can avoid it.... anyway, I had to get all of that off my chest., it hurts so bad to sit here and write dammit, and I need to write and do some things online, but it is hell for me to sit here very long... keep us in your thoughts and prayers... it is going to honestly take a "miracle" I think for her to get "better".... Hugs, Rhia

Ongoing Lupus, RA, trying to cope with Loss of my Aunt, and all that is so complex when you are fighting a chronic illness/pain issue, dealing with stress, surgeries, and grief

Life can be so awesome one moment, and tragic the next. My Aunt Geri, Moms last living sibling, her younger sister passed away yesterday afternoon after battling a rare form of stomach/intestinal cancer now for a long while. I believe it has been at least 3 years, if I am remembering correctly. She went through lots of chemo therapy, but we knew for one it was not operable, and two the doctors had already said that it was terminal. Yet, for the Grace of God, she lived to see her first Great Grand daughter born, and then some. She lives up in Mesquite, so we don't have any details at the moment. Even though her family, along with my Mom and I knew it was coming, you are never really prepared for something like this. Especially with Mom and her lower back issues, and all we have been through and are still dealing with, plus my own issues with my back, needing surgery, then things getting complicated with me contracting cellulitis, no 3 weeks of antibiotics later and the lump remains on my thigh under the skin. When I saw the doctor Friday, he said if this last round of antibiotics does not show signs of going away this, then I will need to see a surgeon, have the lump removed, and then they can determine exactly what it is. It has now gone from being about the size of a silver dollar, kind of a bit hard, but never feverish, red, and nothing ever burst through the skin, like you would assume cellulitis would. That is kind of the reason why he and myself are baffled as to why it remains. It has now turned into being about the size of a quarter but very hard, sore to the touch, plus I developed another lump on my right leg, that is almost in that same spot, just on top of my right thigh, and almost exactly across from the other one. It is not nearly as large, about the size of a pencil eraser, but sore to the touch, and like the other one pretty hard, and does not move around under the skin. At the very first, before I even knew what it was, it was a bit softer, and it kind of moved around underneath the skin when I would try to check out how large it was. Then of course, I had ran out of Orencia - now I guess it has been about 4 to 5 weeks ago. I had issues getting the insurance to get off their butts.. I needed a new script from the doctor, which they received, so I thought they were going to fill it and send the meds to me as usual. Well, after going another week, no call and no medication, I called them. I found out yes, they had the new script, and even though i had already asked for it to be refilled before they got the new one, they did not fill it. Instead they were waiting on me to call back and ask for it to be shipped. In the meantime the lump formed, all of the other stuff came up with both Mom and myself, so I have not had any Orencia in weeks. I feared my last couple of injections may have been contaminated somehow and caused the cellulitis. I am supposed to be on Xeljanz anyway, did the blood work and labs, then the TB lab test came back indecisive, thus I still have not been able to have the chest X ray ... I was hoping to do that last week, then I came down with the stomach bug, and I am still not completely over something with my stomach. I am still somewhat nauseated, which I contribute to the heat, already being sick, a headache, all of the stress about my Mom, my own things such as the back surgery, and so forth. So, now my fingers on both hands, and in between my fingers are swollen, my knuckles really don't want to work correctly and I am having hell with the RA in both hands and wrists. I have always had some issues with them, but more in both thumbs. I have not been able to get the swelling down, and just trying to open a bottle of coke or anything is so painful, plus my grip is really bad right now... and then my darned keyboard that I love... it is solar, seems to be going out on me, thus this one sucks and does not even allow me to do a hyphen or quotation mark, and It is really irking me to no end...PLEASE continue to keep my Mom, and the family in your thoughts and prayers... as I had posted before, this is Moms last sibling, she has lost both parents, a brother, a sister in law... and most of the family on both my Grandfather and Grandmothers side.. of course we lost Dad in 2005... and am sure that brings up things such as that for Mom anyway... I appreciate each of you... I am thinking about trying to get ready for church. I missed this past two weeks because of being so sick and was going to try and go this morning... but I am still dealing with a bit of stomach issues, and with all going on, I HAVE to go and have my pain pump refilled tomorrow, I have no choice. We waited this time until THE DAY my PTM shows the refill date to be. For some reason it almost falls every time where I have to have it filled too early, for one reason or the other... so it worked out to be on the day this time.... more later...

I appreciate your prayers, and yes mine are with you also... this is just proving to be "another one of those tough years".... I had so hoped that 2015, would bring more Light, Hope and Positive things to our lives. Yet, once again so many of us are trying to cope with all types of chronic illnesses, pain, mental and emotional pain also, the loss of loved ones, and this entire nation in general... I can barely stand to watch or look at the news anymore. It is almost too depressing to see just how horrid people can be. From harming their own family, friends, to those who just do NOT care about humanity... the greed, corruption, the back biting, back stabbing... those that get rich off of our own misfortunes, from lack of care from insurance companies, to the extremely ridiculous prices of medications, even generics now are soaring out of the roof... and people have to almost feel as of they always have to look over their shoulder, whether in a huge city, or a small town... so many as I said above that have no remorse, or regard for human life. Even all of the "election" stuff... it just almost makes me physically sick to my stomach at the thought of just about anyone running for President of our nation next year and anyone of those possibly winning... we are already in a terrible condition, not just nationally, but internationally... countries going bankrupt... people not able to find jobs to support their families... and the amount of ever growing medical issues... our water, air, soil... all polluted with Lord knows what... or whether you will walk out of your local market, or church, or movie theater and be taken down by some "home grown terrorist"... I despise even the sound of that... hard for me to fathom any human especially in this great nation being "home grown to terrorize, and kill others... the insanity grows daily.... we have the weight of our own issues on our shoulders, along with the weight of this entire nation and world, as far as the safety, security, and welfare of all of us.. again thank you all for your continued thoughts and prayers... my Mom and I, along with my kids and family appreciate each of you..

Life with Autoimmune Illnesses, Lupus... back sugery, dealing with chronic pain, US Pain Foundation and September Pain Awareness Month, Proclamation, family and coping

Things here are still really insane... it "seems" that my intestinal tract "maybe" improving... I hate to say that and jinx myself... but yesterday and last night and so far this morning it is much better than a week ago... but I still have Mom and her injections to deal with, I still need to get the chest X-ray.. I hope and pray that is 2nd round of antibiotics will completely rid me of the cellulitis... I found another "lump" on my right thigh a couple of days ago, and I was praying it was not more - but I am on the Rifampin and the other one (can't think of the name of the moment) LOL.. but between lack of sleep for nights and nights... and the heat, and stress, worry... my mind is about null and void anyway... Good news!! I am okay for the City Of Ennis to go ahead with the National Pain Awareness Campaign in September "Beautify in Blue"!!! Our Mayor signed the proclamation, and the man that I needed to speak with about signs, ribbons and so forth told me it was fine to go ahead and put those up for next month!! I am truly thrilled to be able to get "my home community" involved in this... even he said he suffers from migraines... so he totally gets chronic pain... I will keep you informed, make photos and post them etc as I get the stuff and get it up here in town... other than that, I HAVE TO GET WELL so I can have this back surgery... I will more than likely switch Medicare Plans for next year and that probably means I could lose my surgeon, so I have to get it done before the end of the year... all of that has been a nightmare also... to find out that my own HOSPITAL does NOT take the Medicare Advantage Plan, after I was told they did... but it is a huge ordeal and AARP should be ashamed of themselves for even sponsoring Untied Healthcare and what they have pulled on their clients... it is all over the internet how they have really messed so many of us up on our providers... I am still very concerned about Mom and all of the "memory" issues and things I've seen over the past several weeks... although I know from experience, lack of sleep, pain, new medications, stress can all be huge factors in our memories etc - it seems to be over and above all of that... anyway, I am playing catch up after being ill for so long and I am still not at my best (whatever that is anymore ) ;) just wanted to touch base with everyone and let you know I am still "alive" and not really "kicking" at the moment...

How MUCH MORE Can one person stand?! Chronic Illness, Dealing with Life's other issues, & not just losing your mind or collapsing in it all....

Honestly gals and guys... I am concerned that I am either getting "worse" when it comes to the RA,Lupus, and so forth... or I have something else really going on with me... I've just had all kinds of "new" symptoms... first of all, I am having moratl heck with my fingers, worse than ever before. My right hand has a couple of very swollen places between my middle finder and my "pointer" finger next to my thumb. Plus my thumbs are really bad again. Plus, I woke up in such severe pain in my lower back and down my legs this morning, I really thought I had a kidney stone again. It was almost like a "cramp" or what we used to refer to as a "stitch" in your side. But, rather than it kind of working itself out, it went on for a couple of hours, and even now it is not the best .... plus I have this worsening of the "weakness" type o feeling in my legs, almost like they are jello and feel as if they could just "collapse" when I am up walking. I've also had BOTH of my ankles again not so great, but my right one as always, is so swollen and hurts like I sprained it or something... and I still have that "odd" kind of pulling pain underneath my right arm and into my arm pit then kind of a bit around to my back.... my stomach is just a mess... as if I was having or trying to have "spastic" colon issues, but it has been 20 plus years since I had one of those attacks. I used to have them when I was younger and of course they always called it a "nervous stomach" back then. But, it is of course down into my lower intestines, like they are trying to cramp up... and then there is this almost too weird to try and explain, "severe" fog... brain fog, memory fog... and now it is just so bad... I walk around almost as if I am in a daze... and my memory is horrible the past couple of days... but I feel almost "detached" from myself... and I've had that happen a couple of times in the past 10 years or so... where you almost feel like even though "you are here"... you almost feel as if you are looking "down" upon what is going on... and really not "in" the situation,., I know there are terms for it... kind of one of those "fight or flight" responses, that our "mind" uses when we are way overly stressed... and when that "breaking point" begins to be felt... then we seem to "detach" from it all, and become a "quiet observer" because it is just ALL TOO MUCH to deal with... thus it is a mechanism to keep us from going completely bonkers... and my "LISTS of LISTS"   keep getting longer and longer, yet I am further behind more every day.... It seems EVERYTHING right NOW is "priority",.. yet none of us can do 100 things all at once, and really "survive" going nuts....plus the night terrors have been so bad, this place of feeling so totally like a "failure", feeling like I don't "fit in", that people "dislike" me, and they look down on me, because I am not "enough"... Just about every night terror I have has this same theme... either I am "not good enough" for family, or some job, or some group of people I am around, or my "spouse".... hahahaha ..... now you see where I am coming from... I feel that now my life is HALF over or MORE THAN half over and I'VE NOT ACCOMPLISHED  a damned thing I have wanted to... the list of things that my home needs is endless... now many of those that I would LOVE to be able to do... I know are not feasible for me to even give thought to....yet when I get so "bent" as I love Matchbox 20's song, "Bent"  - I feel exactly that way "bent"... I have always thought no matter whether my family, a friend, someone I worked with, associated with... or anyone for that matter, that I am just "not enough", "not worthy",,, I've NOT done, this, that or the other... and that I SHOULD be accomplishing so much more... and the more I try to do, the more BEHIND I feel as if I am..... BUT TWO GREAT THINGS!!!!!! NUMBER1 - I GOT MOM'S INTO PT! And it is here in Ennis AND THEY TAKE THE INSURANCE!!! whew!!!! NUMBER 2 - She is scheduled to go see the pain doctor next Thursday so they can schedule the injections... SO HOOOORRRRAAAAAYYYY!!!!! THAT were two of the things I was most concerned about... so those are good to go.... NOW I MUST being to decide WHAT TO DO ABOUT MY LUMBAR/SACRAL spine fusion!!! I "THOUGHT" I MAYBE able to put if off for a while... but, as badly as the pain has been even worse than before the test was done... I don't think putting it off is an option, well not for long... I think just as my pain doctor said, get it fixed NOW... for it will only get so much worse, and I do not want to wait until I am even worse... then my recovery time OR even (and this may happen anyway) I think when he does surgery, it will be a HUGE worse MESS than any test showed... it never fails for me... it always is like that.... anyway.... I am still knee deep in stuff to do... but it am just totally wiped.... more to come...

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......

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

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... ;)

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




 

Second Guessing Your Autoimmune Disease(s), Is there a "real remission" to some of AI's - Sjogren's, Lupus, RA, and more...

As I have waded MANY times through the entire "list" of autoimmune illnesses, diseases, syndromes and disorders, again I go back to the spot where I have to wonder: #1. Is my diagnosis correct? #2. Is there another 1, 2, 3 and so forth of AI's that I have, and if so are they being "managed" by the other medications I am on? #3. Are my entire entourage of physicians correct and have they done the proper testing, given me the right medications to help me gain me "control" over further degeneration, more pain, and one day truly feel like I have possible remission? Is there even anything such as "true remission" on some and/or all of the AI's? Is "this" (whatever stand in time I feel I am "at my best as far as being symptomatic) and I will just go onto endure all that is not alleviated as far as pain, future health issues, more pain, and less of a way to fight these illnesses? Does the medications that I am on now, or the ones I had been on, and other types of treatments, therapy, surgeries, and so forth truly mean my "health future" maybe "brighter"? Or I am, along with my physicians and so on, really making a true difference in how I am effected in the long haul of the future?

I KNOW for myself, and I will say probably the majority of patients, caretakers, spouses, families and friends ALL have these thoughts go through their minds. If like myself, this happens quite frequently; especially if you feel you have not made much progress in getting symptoms, fatigue, inflammation, pain, and others where you feel you have reached a comfortable level of relief. As any pain specialist, or probably any type of physician will tell you, there is ONLY so MUCH that can be done. For some, like those with Multiple Sclerosis (MS), it appears there are many more available treatments, more doctors that are familiar with the disease, and you hear fairly frequently of MS patients going into remission, and some for years.

Yet, as far as RA, Lupus, Sjogren's, Raynauds, Diabetes 1, Pernicious Anemia, Addison's Disease, Still's Disease, and the others, not so much. Usually those of us especially with "multiple" AI's never seem to feel as if the diseases are under control. We may feel that way for a week, or even a month or two, yet for me, each and every morning I put a foot to the floor, the RA pain is there. Now some days are better than others. We also know for a fact, weather, stress, jobs, family, and what we do, all have an effect on just how much "relief" we have from one day to the next. Brain Fog is one of those that rather than feel as if I maybe moving forward, I seem to be regressing further into the fog. Month after month I can tell by the way I do things on a daily basis, that the "fogginess" of Lupus, RA, Sjogren's, and such tends to get worse, not better. I am making many more lists, I must go through and reread paperwork over and over again. At times, even seeing something online, I can't recall it, or I walk into a room, and can't remember why I am there in the first place! I tend to leave things "half done", only later to come back and see, "Oh, I didn't finish making the bed", or I never watered all of my plants... possibly Mom asks me to look something up, and if I do NOT write it down, it's as good as gone by the time I leave her house and drive a whole 6 or so blocks to my home. Of course, there are many more little "things" that either I do, or don't do.. and I realize it is due to the Lupus Fog...

As far as the 2nd guessing, I am quite sure I have probably took my symptoms, as they come up, and now several new ones are popping up, and go all the way back to "square one" to research the entire ordeal. Do I really have Lupus, RA, Sjogrens' Raynauds.... and so forth... OR do I have Myasthenia Gravis, some type of "regional pain disorder, compression fractures in my lower back causing severe pain in my hips and legs. Maybe I have a hip that is totally worn out or getting that way. Much like my knees, I've had one hip give me "the blues" on several occasions. Enough that it sent me to my Orthopedic Surgeon so he could put a huge needle full of corticosteroid in it. Usually, that would work. My knees, shoulders and elbows were much the same way. I would have a huge bout with my shoulder or elbow, or knee and I would go in, get an injection into the joint, and I may do well for a day, week, month or years! OR like my knees and shoulder did, after so many injections over the years, and several arthroscopic surgeries on them, I had to have both knees totally replaced, as well as my right shoulder. My elbow has had surgery and has screws in it, and I know it has torn loose and really needs a "scope". I fear though it would be just like my knees and shoulder, the doctors does a scope, and he sees it is totally worn out, totally degenerated.. so "fixing" it is impossible. So, like my knees and shoulder, I went for years, as long as I could stand it, and the injections helped, then I had them completely replaced. You reach a place that you know there is no way you can put up with the severe pain, the loss of range of motion, the weakness, the inflammation... so you make your choice.

I've never regretted ANY of my joint surgeries. Each and every one, from the scopes, until the total replacements, gave me the relief, more strength, better use, no inflammation, and was a great deal better, than not having them replaced.

But, any type of joint surgery, even with the arthroscopic ones, there is never a guarantee you will be "better".... it could mean it may not help at all, OR you have complications, or possibly it feels worse. Now, once you have a TKR (total knee (joint) replacement) that does provide relief, stability, range of motion etc.

But, with the scopic types of surgery, as incredible as they are... and also as incredible as our CT scans, and MRI's are.... NEVER did ANY of them give my doctors the "real story" in my joints. Once they "opened" the joint up, then is when they discovered my joints were totally gone, in no way able to be repaired or "patched" up. I've had my Orthopedic surgeon tell me that over and over again. As good as our tests are, sometimes they do not give the big picture.

My neck was a prime example. I went for YEARS with severe neck pain. I was not able to turn my head very much, or bend it forward or backward. I constantly had severe pain in my shoulders, especially my right shoulder and shoulder blade. I went through numerous tests, from the MRI's, the CT Scans with the dye, regular X-rays, and even a couple more tests to check for nerve damage... EMG's and so forth. They found some nerve issues, both in my legs, and down my arms, yet I jumped from one specialist to the other, with every test, every scan, all of the tests they done as far my nerves.... yet it took me forever and a day to finally CONVINCE a very astute, very stubborn and head headed, yet the very BEST SPECIALIST in the area of not only joints, joint surgery and replacements, BUT he also knew spinal surgery, better than any other doctor I can remember.

After FINALLY getting him to do the "reverse shoulder replacement" on my right shoulder, the first 8 weeks I was truly amazed......


It was not long after that, my shoulder blade on that side, began to feel as if it were burning. Of course I had the shoulder totally replaced, so the "searing" pain (unless something happened like an infection) should not be giving me problems.

Again, back to the same Orthopedic Surgeon, who just DESPISES "educated patients". He just think HE is the "master" over all things "ortho" and we as "layman" don't know "crap"...

I've told my own story over and over about his horrid "bedside NO manner"... as before when I went in to tell him what was happening, he swore that the pain should not be coming from my neck. Well, I totally knew unless like I said there was an infection in the joint replacement, OR the huge bundle of nerves that run right along in that area, and out to the shoulders, shoulder blades, arms, and so on had something wrong. Which "could be" but was not likely.

Again, we go through a special "scan" of my neck. It comes back with C-3 through C-4, C-5 and C-6 having issues. Exactly how much, well from the pain I was having and looking at the CT scan with contrast, showing "bulging, and a few other issues, the 4 level "replace 2 discs" and fuse the other 2, is what was decided. He was set even with my shoulder, that if he got actually into the "joint" (right shoulder) and he didn't see nearly enough damage then he would "repair" it and not replace. But, all cards on the table, said "reverse replacement". So, the "new shoulder" was waiting for me before the surgery. Sure enough, after being able to "see" the severe damage, there was no question a reserve total shoulder replaced.

Albeit the same with my cervical spine. There was a great deal more damage "inside" that the scan didn't pick up, which meant he (and I) were right on with the "replacement/fusion) discectomy. By the time I came out of the anesthesia, I already knew I was 100% BETTER!  Even though it was the quickest surgeries for me, as far as very little pain, etc after surgery, it was 6-8 weeks before I could do much of anything but walk. Which kind of was "bad". Because it "felt" so much better, I had to be careful and watch myself. It was a miracle.

Later he came in to tell me what he found etc, and that I actually was pretty "right on" with my own "diagnosis"... thus that kind of helped for the both of us as far as NOT feeling like he needed to make me feel crappy just because I do my "homework".

Now of course is a totally different type of problem. Not one that is easy to face, nor easy to diagnose, and also one that many, MANY times said "I WOULD NEVER" have my lower spine operated on. Due to ALL of the bad things, from online, from people you see and know... it was something I never wanted to even have to give thought to. Well, here I am once again wondering what will have to be done in this case.

So, that is why I am questioning EVERY diagnosis, every thing I have read, researched, been told, by both other patients and doctors also... whether remotely that I even want to have the "discograph" or whatever they call it. Yet, even sitting here now, I feel that "pain" that is so very familiar. If I sit for a while, it begins that burning in my lower back, butt, and down my legs. I still feel like my hips are a part of the puzzle, but he insists my hips aren't causing this kind of pain. Of course he takes an X-ray, that basically says the same thing that the CT Scan I had about 6 weeks ago says, thus this stupid invasive "discogram" will probably also show the same... The TESI (Transforminal Epidural Steroid Injections) worked for a few days, thus that "tells them" that are hitting the mark. That is "a part" of this. Yet, I am still convinced my hips are also a part of it also.

So, the "gram" is set up at the end of May around the 27th. Everything else going on left me with no choice but to make it a couple of weeks off. First of all, again I will have to have my son drive me. I can't drive after having it done. And Jim can't drive and no way my Mom could drive in Dallas. She does well to drive to the market and back in Ennis!

So, I am now kind of "fed up" with all of it. My hopes are the pain will cease and desist, so I can go on and enjoy my summer, and not be down with a freaking major surgery.

Plus who the hell is going to take care of me, and the house, etc??? Jim can't do a lot of things as it is, and no way would I have some stranger coming in to help us, while I recover.

So, there are lots and lots of things to consider, before jumping head first into this quagmire of tests and surgery!












 

What do you do when you just don't know what to do? Discograph, CT Scan, and just FED UP!

I've just about had my fill of physicians, medications, tests, evaluations, scans, and everything else that falls within and in between the realms of "chronic illness and chronic pain"....

It is like no matter how hard you try to do ALL you can to make things run smoothly, you can bet someone will be either rude, hateful, or other words I guess I won't say here in this post, but it rhymes with "witch"...

I've been on the phone with the different doctors offices this morning, TRYING to make their job a bit easier. Both times, and it was both the doctors main nurses, that decided rather than be "nice" they were going to be jackasses.

The first one, has always been a jerk. I don't even know why she continues to be a "nurse".  Her personality along with this particular doctor's as about as kind as a brick. You feel like you are little kid being punished over something you didn't even do. I tried to ask her question, as she began rattling off to me what "the doctor said"... and rather than her give me a moment to ask if he "has all of the records" from my pain doctor that did the injections, and did a follow up, she told me, it matters not, and I don't have "time" to dig through your chart to look! What an ass! Well, if those records are NOT there, then it could be that the doctor does NOT have the whole picture. In the first place, my pain specialist, who has known me now since about 2008-09, I TRUST! When he told me last week a "discogram" was redundant and not really necessary since the injections helped for a few days... that if surgery is needed, then get it done, and don't wait. He is usually "conservative" but his main issue is that he fear with the insurance I have, if I put it off and it gets worse, my insurance may "buck up" and give me hell having it. Thus he said before I have worse problems, worse pain, that he recommended to go ahead and have it. It is just one "level" for now, which should not be nearly as "less likely" to do well, than if I were either older, or something else happens like I get a compression fracture from the osteoporosis. In fact, he said that I could already have one or more but, things could get worse. As usual, each time I've had a joint surgery, when they actually get into the joint to see, it is a freaking mess. I've been told that with EVERY joint replacement I've had. Every time it seems it is much worse than what any scan, MRI. X-ray etc every shows. Last time all of the "damage" was deeper into the joints, thus no scan would have ever shown it. They had to go by symptoms, amount of pain, and kind of figure from everything I could tell them what was going on. And each time I've been right. It is always worse than it was on a scan.

So, to now want to put me through yet another, much more invasive "scan" or discogram, he should be aware of me also... that I am not the "usual" patient. There always has to be something "different" with me... I am always the complicated, never know until you know what is going on.

So, now today (May 7th, 2015, I get a call to "schedule" the discograph, gram - whatever they call it, which is by more than one name... and they tell me I can have it done anytime, just tell them when. Well, this week is totally out of the question. I will again have to see if my son can take me. This will be done at Medical City in Dallas, at one of the "specialty" radiology places there. So, as I look at the calendar, and of course I am hurting today bad enough to scream, but this weekend is Mother's Day and if the WEATHER will act right, Mom and I are going to the Casino... but of course the weather is showing to be not so great Sunday and Monday, so once again, I maybe cancelling the trip. Plus here it is Thursday and I have not even began to get ready. I don't have anything thought out to wear, both my nails and toe nails need to be painted, and I need to decide what to pack and so on, and so forth. The weeks tend to go by much too quickly. It is Monday, and before I blink it's Thursday!!!

So, next week it out. Plus that is really not enough time to give my son a chance to work it into his schedule. So, the followng week I already have 2 doctrs appointments in Dallas. My Rheumatologist on Wednesday and then my pain pump refilled on the Thursday of that week... so they already have me plenty booked for that week. Thus that leaves the last weekend of the month. Which again seems like forever when you are hurting, and after I hung up I said Damned maybe I should have scheduled it for next week... but again I have to have someone to drive me home... so I have to give him time to schedule that in also.

It sucks now, because there is no way, no how, Jim nor Mom can drive... and Mom not at all in Dallas, hell it is already bad enough in Ennis....

So, now I have this thing scheduled for May 27th at 7:00 AM and they will do this at 8:00 AM. I've got to look some things up. No one mentioned insurance and so forth. So my though is she was the "nurse" who schedules everything, and someone else from the business office will be hitting me up for insurance and money.

I hope to Christ it is about what the injections were, which still is NOT cheap.

Yet after the article I read about Spondyliti, now I am wondering if this should be an issue I take up with my Rheumatologist anyway before I start having an invasive test. It could be that there is damage there and the tests don't see it, as usual on me, OR if I do have this, then it maybe 7 to 10 years before the evidence shows on any type of scan... here is the URL to the article:

http://www.rheumatologynetwork.com/acr-2014/long-awaited-spondylitis-guidelines-previewed-acr-meeting

Which if that is the case, then this could be something that a medication change or something may help rather than going on with a test that could lead to very lower lumbar/sacra; (L-5/S-1) surgery. As I say, say and say again I REALLY DO NOT WANT TO FACE LOWER BACK SURGERY!!! It totally frightens the hell out of me. I've heard TOO MANY "failed" back lower surgeries, that either put people in worse pain, in wheelchairs, or lead to other back surgeries to fix the first one. 

Of course I did also say that about "cervical neck surgery" also. Yet, when it came to knowing I would have "RELIEF" from the horrid shoulder blade pain I was in, I was ready for anything to take it away... thus as soon as I came out of the surgery, the pain was basically gone... so there are times that any kind of "back surgery" that can give a pretty good rating of helping to reduce pain and give back motion is something to consider, but also consider very seriously about all things involved... so I cannot say NO, I WON'T .... because if that is what it takes to rid me of this pain, where I can move forward with my life, and writing my book, then I may not have any other choice but to go along with it. 

I will post some information about the procedure in a bit. Again, I am hurting having to sit and type... so it's time to get up and move around for awhile....

http://www.rheumatologynetwork.com/acr-2014/long-awaited-spondylitis-guidelines-previewed-acr-meeting