Toni Berhard's "NOT To-Do List for the Chronically Ill"

This is totally awesome!!!! I just have to share. All of these of course are exactly what we as "chronically ill" people find ourselves DOING rather than NOT doing... Here is the URL:

http://www.psychologytoday.com/blog/turning-straw-gold/201308/not-do-list-the-chronically-ill

A Not-To-Do List for the Chronically Ill

Items that belong on a not-to-do list for those with chronic pain or illness.

Published on August 2, 2013 by Toni Bernhard, J.D. in Turning Straw Into Gold

Seems like another ever winding road around the bend....

A bit more on updates... of course hurry up and wait... I shall give more information as soon as I feel like sitting in this chair... but here is a little...

Thank you so much Nancy Hershelman Gipson and Clarissa Shepherd!!! I love butterflies... they make me feel the freedom I so long to have from pain... well, that stupid waste of our time office visit is done, and it is HOTTER THAN HELL HERE... OMG Nancy, I know you have to be burning up also... we are under a heat advisory until tomorrow night... it will just take your breath out there... I am totally EXHAUSTED!!!! So, I will read and answer tomorrow or mmmmm probably more like by 2am, knowing me.... So, now of course the same old dog and pony show. My Doctor has to get Humana the paperwork so they can approve the injections. Then they will get me scheduled for them over at the outpatient center probably (I cross my eyes and fingers) NEXT Friday BEFORE he does the shots. Dammit, he has his "special" days at the hospital and he will probably make me wait until Friday. But, he upped my pain medication BOTH in the pump (I am not sure I told anyone he did that on Tuesday) ... It gives me more round the clock now than it was... AND I am still on the every 6 hour oral pain meds also... so the pain is somewhat "at bay" off and on now. You know he showed me something today I never thought about. When he comes over to the outpatient center to do my refill on the pump, he is "one doctor". Yet, in the office, I almost do not recognize him at all, as far as personality. HE is like Dr. Jekell and Mr. Hyde honestly. When he is over there AWAY from THE ENTIRE OFFICE SITUATION, he TELLS IT LIKE IT IS... he is bold about all of it, from insurance to my pump, etc... yet today, he was just like well, tell me what is happening (like he did not know) ... I answered all of his questions, and he kind of just "took all" with a grain of salt. HE was SO EXTREMELY UPSET Tuesday about what is really going on with me... and what we have to do to get me fixed... yet today he made it sound like no big deal... and I should be ready to go with a little shot... I told Jim if he knew the damned guy or not!!!! BUT, in that office, he has two associates. And I think he has to Keep them in mind, because those office walls can be heard through. It was just so eery to see him act like two totally different doctors. I will explain more later, but like I said, I think it had to do with "what the staff" needed and NOT needed to know or over hear... and due to the two doctors there, he had to Keep in check... it was strange... alright.. well I feel like a run over shoe... without hardly any heel left... Love you all for being so good to me.... Hugs Rhia (by the way, everyone is LOVING this laryngitis stuff ...LOL... I am totally silent... I can't utter a word. but... my throat feels more horrid than ever before and my entire mouth and tongue itch so badly... I just got a call from my PCP though.. he is calling me some medication in... thank goodness. :):) So, maybe I won't have to go in tomorrow to see him and can stay the hell at home...



Just some updates on all that is going on... I also am in the process of getting several doctors appointments. One for my feet, my dentist's ones that are already on the books, plus now I have freaking laryngitis, and I know I must have a throat infection. My throat is so bad, it feels like razor blades go down in it and I can't stand to eat hardly anything. Now my voice just completely left yesterday. So, I am dealing with that, trying to get it well for the dentist next week, plus  will probably have those lumbar injections if they can get all of the paper work, scheduling etc. done quickly enough. Please post any of you... anything pertinent, about these illnesses, about Medicare and Insurance, ... I would love to hear from you.... So, below are some FB posts that need to be here also....:)

By the way, here is a website for information on the "Prialt" I speak about for pain control. I was going to post their own website, but it appears it is "under construction"....

 http://www.webmd.com/drugs/drug-92576-Prialt+IT.aspx?drugid=92576&drugname=Prialt+IT


Too early once again. Lots going on. For one we DID get my pain pump completely filled. But the bad is I maybe looking at an extreme change in medications in the pump. Due to my extensive change in my pain, and we are just not getting it under control nearly enough, my pain specialist is talking about changing to something like a compounded medication which would be done at the huge research hospital where they have the specialists to do that. OR the other thing he mentioned was switching me over to "Prialt". I am somewhat knowledgeable about this medication, although I had no idea that they do use it in the pain pumps. It is a medication NOT narcotic at all, but it acts more on the "neuro" side of the issues with pain control. If anyone knows about it, it is made directly from "sea snail venom", and was happened about after someone got stung by one, and the story became happily for them for sure. More like a "neuro" impulse stopper, like Botox I think is what it is supposed to be... yet it is supposed to be much more powerful than ANY type of pain control in the world.  Of course with that comes, LOTS of changes slowly again, adjusting the med, then getting me slowly off the narcotics so I won't just fall over and pass away. His "wheels" were turning yesterday when he came to put the medication in the pump. He is really trying to figure out FIRST of all WHERE my pain is coming from so suddenly again, how we can fix it, and how to get the pain back under control with the pump. I see him again today.. damned I hate yet another jaunt to Dallas... so he can get the insurance to approve doing some epidural lumbar steroid injections as soon as possible. We think the sudden horrid pain may be coming from my hips or lower back. I DO have bursitis, and my orthopedic surgeon injected those last Friday. They have been so sore and hurting I was not sure the injections done a thing. But, it seems yesterday I did notice a bit hip relief. So, it takes about 5 days for those steroid joint injections to do their job. The other issue could be I have a compression type of fracture in my lumbar spine. Since I have "severe" osteoporosis, it could be that has happened at any time, and other than pain after it happened suddenly, I may not even have known. Usually with compression type vertebra fractures they can do it when you are doing nothing. You do not really "cause" them, they just crumble suddenly whenever they decide. So, that could very well be a big piece of the pain puzzle.

I am dealing with this very issue right now. I already have Sjogren's and osteoporosis, which certainly does not help. I have been avid as possible about the dry mouth, and even went back on prescription meds this past week due to severe, all of a sudden bad tooth problems. About 5 months ago, I had a chuck break off the inside of my top front tooth and the then side. It felt like it just crumbled into powder. From there, I had another one that had a cavity, and I have not had a cavity since I was 10. Then a couple of months ago, I had one top molar just come into two pieces. The back half broke off of it. About 2 days later the same tooth on the opposite had the entire side bust off of it. Then while I was looking at those, heck I noticed a cavity coming out in another back tooth, the very last one on the bottom!!!! I about went ballistic!!! I could not believe all of a sudden I had that much going on with my teeth. I am continually chewing sugar free gum, I definitely brush my teeth, most of the time twice a day. I use peroxide in my mouth after every brushing. I clean food out of my teeth with those handled plaque removers after every meal. I wet my mouth all the time... and so forth. Plus I have fought mouth issues with infection, thrush a time or two, mouth ulcers, so something seems to be going on, but never this much as far as they are just falling apart. All of us know the dentist is NOT CHEAP! Even mine that I know and have used for at least 20 years or more, has RA himself. So, he is limited as to even what he can and can't do now. He cannot pull the two top ones, and they can't be saved. He can fix the bottom cavity, and then he continues to "patch" up the smaller places in my front top teeth. And even with his "break" because he knows our situation, still when you have to make more than one trip it gets expensive. And of course we have NO dental coverage. I never had any that was worth a crap anyway. And my husband just had one of his same morals have to be pulled about a month ago. So, that one already cost us. I can remember paying about 45.00 to 55.00 or so for a cavity fill. And he usually charges like 25.00 to clean. But most of them charge at least 95.00 to pull one. And usually you can't get them to do them at the same time, which probably would be cheaper. One less office visit charge for sure. My own dentist will have to send me to another one here in town he works with for patients like myself, that has something mine can no longer due since he himself has massive pain, inflammation etc with osteoarthritis and RA. So, this other dentist does charge about what mine does. Which is nice. Still 4 office visits are probably going to cost me at last 90.00 each!!! And that is only the top of the deep well of medical expenses for us lately. Both of us have new glasses. Well, my husbands came in and they are awesome!!!! Mine should be here possibly tomorrow or Saturday. We got them from 39.00 glasses.com... and believe me the savings are exceptional. I know we saved a bundle on both of ours. Jim is just about legally blind so his are not cheap. Plus his eyes changed so much, that he had to go to a progressive lens (LOL), then we both get the "Transitions" in them. so, his usually due to the type of lens and thickness run at least 300.00, maybe more with frames. Mine now are of course progressive, but also both lenses have the prisms in them also. Which costs me more too. So, between us, we saved over 50%!!! So far his are perfect and he loves them. I have ordered from them before and loved mine, so I am hoping mine are perfect also. So, any of you doing glasses, you might take a look at their website. You may be able to really save a bundle on glasses. And they have a 100 percent you love them guarantee and that they will be correct, plus they are fast, and their customer service is wonderful. I have been very happy with the whole experience. Well,  sorry for my rambling. I am making up "typing" for not being able to utter one word with the laryngitis. Boy my dogs look at me crazy!!! They were puzzled when I tried to talk to them yesterday.... you ladies I pray have good days ahead, without pain and fatigue.... and hoping for all of us to have a better quality of life....

The (My, for sure) Mind Boggling World of Lupus, RA and Their Destructiveness and Severe Pain

(partial post that I put up on FB answering a friends questions... and it seems to fit here very well also.)

 You are so right on the "bionic" woman part for sure !!!!! I will try and not miss any of your questions ... brain fog can be heck.. as far as the "symptoms" of Lupus/RA/Degenerative Joint and Disc Disease (and others)... several of those symptoms like my joints deteriorating and needing surgery very early in life, severe chronic pain in my joints, stiffness, swelling, filling full of fluid.. all of those have been with me since about the age of 30. I had joint issues and a couple of surgeries actually by 25, but at the time they thought those issues were strictly related to an old accident I had playing baseball with my cousins when I was about 15. I also had severe migraines by the time I was 17 (I feel those may have been some of the "beginnings" of the entire thing). About the age of 35, both shoulders and elbows had already had many corticosteroids injections. I was continually in pain with one or more of them. They would swell, fill with fluid, be hot to the touch, I would have sometimes hardly any motion in them. Yet at that time, it was a I guess way too early, plus the "RA,Lupus" stuff at the time was really not something even the medical profession knew a great deal about. I was told I had "genetically inherited" bad early osteoarthritis. After that the surgeries, tests, injections... mainly my joints it was attacking then, and still much of it is joints falling apart. I had various other symptoms throughout my life... chronic pain and the joint issues, plus at 40, I had my FIRST heart attack! I think if the doctors would have known MORE about Lupus at that time, and RA, and all of the autoimmune stuff, they may have been able to put it all together. Yet, back then, it just still was so much unknown about any of these illnesses. I DO know a couple of very young women at that time, that did have Lupus, and back then it was basically a "death sentence". Not many had heard of it, and if so they knew nothing about what was happening to our bodies. So, in 2005, I came back to TX, after living in Seattle for 5 years. I had a "frozen" shoulder for about the last 2 years I was there. I had no insurance because I had already gotten too ill to really work, my heart acted up some, the headaches were unbearable, I had chronic eye infections one after the other, my energy level was off (but it was like that throughout my adult life), and I was just not able to take the stress of a job. Then in 2003, in fact I was in the process of beginning a brand new job that morning in October, and I was so ill driving through down town rush hour Seattle traffic, I had to turn around, call my new job, and go directly to an "acute care clinic". I had DOUBLE pneumonia & WHOOPING COUGH! The doctors treated me at home, with several visits back and forth, and did their best to keep me out of the hospital, due to not having insurance. I was VERY lucky, but it took me over a month honestly to really get well. I went to work after about 10 days, but I will really still too sick to be there. Yet, I HAD to have that job, and did not want to Lose it before I even got there. Thus I went to work. The entire time of about a year there, I was ill constantly. Either a lung infections, eye infections, severe migraines, too fatigued to even get dressed, then my heart acted up. Jim and I were almost "brand new" in being together. We had only known one another about 4 months or so, when my heart had a "bump" in the road. I had an overnight stay in the hospital, and when I got out went by my work with a NOTE in hand... I was NOT able to work per the doctor for at least 3 to 5 days more. Well, basically, I was told I could "resign" or be terminated either one. I chose the first. I figured as soon as Jim found out, he would probably RUN! I would not blame anyone for running as far away from this "ill" woman as possible. We had already developed a special bond ( from the first date we always say), and not only did he stay, he was the one that was set on me NOT going for another job, and for me to try and find OUT WHY I WAS SO ILL. A few months later, my lease was up on my apartment, so I moved into a house with him and his good friend. It was big, and just the two of them. So, he basically took care of me financially, while I began getting medical assistance so I could be able to even go to a doctor. I finally did get some temporary WA state help medically with doctors, medications and so forth. They even helped me pay some of my gas to and from doctors, I got a tiny "stipend" monthly to help out with the bills, etc. Still no one could get it figured out. I was continually either in pain, or had a joints, more like joints acting up, or sickly off and on. So, after moving back here in 2005, I went to an orthopedic surgeon here in my home town, that was fairly new. He had done my Mom's carpal tunnel surgery about 9 months before I got back here, and still with no insurance, I knew there was probably little he could do. BUT, I had ALL of my medical records from the past like 10 years with me, and HE WAS AN ANGEL! The first visit, he and his assistant both conquered my right shoulder desperately needed surgery. Yet, several of my joints were showing that they were "wearing". You know he NEVER TOOK A DIME, for that first visit. He told me to save that money, and pay for a script he even wrote out for me for some Toradol, or some anti-inflammatory. Then he told me once insurance came in (he takes Medicare and their Advantage Plans) that we would be seeing each other for some work. Boy, was he ever right! In late 2006, I had been told my complete disability was given a "thumbs up". So, I would get my SS benefits and most of all MEDICARE! That mean shoulder surgery! So, in 2007, I actually had 7 surgeries on joints. I had MORE THAN one falling apart. STILL, no one could put two plus two together. I almost had honestly. I had already done so much research about all of my issues, illness, ongoing symptoms, the early onset of it all, and I really felt deep inside that I did have something like Lupus... etc. I went to a brand new family doctor when he first got to town in about late 2008/early 2009. After him seeing me several times over the course of a few months, he done extensive blood work. They took 17 VIALS of blood from me finally. He ran any and every type of test I think along the lines of autoimmune illnesses that were possible. Thus I came up with a "positive" on my ANA, and several of the other tests that gave me a pointer to autoimmune/Lupus/RA /MCTD etc. ONe that piece of the puzzle finally was put in. The rest is history.... many, many surgeries, illnesses, and an extreme amount of pain later... here I am... I have literally had to kick, scream, cry, make numerous visits, phone calls, different doctors, tests, blood work, to get to doctors that could PUT IT ALL TOGETHER! It took BOTH of us, taking things printed from online, from our own research, from almost "telling" doctors what we "felt" was wrong, to those who would listen and truly understand it all. So, no the journey to where I can "still stand for now" today has been a scratching, crawling, sliding down, and climbing up the mountain again experience. Jim has and still is a total Angel. He had to be sent by God, because I just do not see anyone on this Earth "staying" AND LOVING ME as bad as things can be physically for me at times. HE ALSO can relate because he deals with a great deal of chronic pain from lower back issues that they think he may have been born with. But, I KNOW that I am totally BLESSED, FORTUNATE TO HAVE HIM AND FAMILY, FRIENDS that try their best to surround me with love, hope and faith. They put up with my "fussing" and griping, and the times I am down and can't go and do things... he is more than a "trooper", for sure. (I am going to put another post and continue this one. It is getting too long... LOL!!!

Anyway, as far as the NOW situation, I FINALLY got to THINK things over yesterday morning, as I literally "hobble" around the driveway doing what really does NOT look like me walking, but I am STILL THERE, then watering my plants, and it HIT me after seeing my Orthopedic surgeon Friday what possibly is happening, and what possibly needs to be looked into. I have now became "broken" again, as I said to Jim... I had been "fixed" after getting back to TX. BUT, places that had not been messed up NOW ARE. like my hips, my thumb joints, my feet, my lower back.==, and elbows. My hips, elbow (L) and right elbow, along even with the left shoulder, have already either had a surgery or several rounds of injections over the years. It dawned on me HOW MUCH DAMAGE I had when I first GOT FIXED IN 2007/08 and even since then. BUT, now it has happened again. Those areas that have not been repaired or replaced are now in need of some help. Either injections, or some type of surgery, or replacement. It is the ONLY thing that makes total sense to me and Jim. Thus, I KNEW if I went back to my very FIRST ORTHOPEDIC surgeon last Friday, HE would be able to put new perspective on it all. My PCP, Pain doc... etc.  have all been TOO close in it over this past 8 months or longer. They, like myself want to see it as an "all inclusive" Lupus, or some type of other AI illness thing. But, the pain is there, the evidence is there on tests, and my experience previously points right to the same. So, I did lots of research yesterday about doctors, my insurance and so forth. I made me a "list" of what is the WORST as far as pain etc NOW, and wrote it all down. Then I made a list of my doctors that I already have to see if THEY are the ones that need to possibly do the surgery (surgeries).  Anyway, as far as the NOW situation, I FINALLY got to THINK things over yesterday morning, as I literally "hobble" around the driveway doing what really does NOT look like me walking, but I am STILL THERE, then watering my plants, and it HIT me after seeing my Orthopedic surgeon Friday what possibly is happening, and what possibly needs to be looked into. I have now became "broken" again, as I said to Jim... I had been "fixed" after getting back to TX. BUT, places that had not been messed up NOW ARE. like my hips, my thumb joints, my feet, my lower back.==, and elbows. My hips, elbow (L) and right elbow, along even with the left shoulder, have already either had a surgery or several rounds of injections over the years. It dawned on me HOW MUCH DAMAGE I had when I first GOT FIXED IN 2007/08 and even since then. BUT, now it has happened again. Those areas that have not been repaired or replaced are now in need of some help. Either injections, or some type of surgery, or replacement. It is the ONLY thing that makes total sense to me and Jim. Thus, I KNEW if I went back to my very FIRST ORTHOPEDIC surgeon last Friday, HE would be able to put new perspective on it all. My PCP, Pain doc... etc.  have all been TOO close in it over this past 8 months or longer. They, like myself want to see it as an "all inclusive" Lupus, or some type of other AI illness thing. But, the pain is there, the evidence is there on tests, and my experience previously points right to the same. So, I did lots of research yesterday about doctors, my insurance and so forth. I made me a "list" of what is the WORST as far as pain etc NOW, and wrote it all down. Then I made a list of my doctors that I already have to see if THEY are the ones that need to possibly do the surgery (surgeries). Honestly, I have ONE Orthopedic specialist/genius that probably can do ALL OF IT, plus if it turned out my LOWER SPINE is the issue, he did my cervical spine also. He is the one that did my two most difficult surgeries, my neck and then the total reverse replacement shoulder on the right side. Those things are very "new" and cutting edge in many ways, as far as technology goes, and he KNOWS HIS STUFF! So, I THINK rather than going to several doctors due to having several issues, I am going to cross my fingers and that he still takes my insurance, and will see me. He had been splitting his time between two offices, thus I hope he is still at his original office next to the hospital where my pain doctor also is etc. I KNOW they take my insurance, and I have been in there numerous occasions. Thus, that makes sense to me. As far as a SURGEON, the man is a total GENIUS! As far as a "bed side manner", at first we had issues. He can be at times "egotistical" and of course you can't blame him BUT he also has issues with patients "knowing" things. HE DOES NOT like me going in there with all of my research etc... and then kind of "telling him" what I think is happening. Well, I can't blame him I guess. He is the one with the knowledge, the skill, the education, and I am the patient with my guesses, research, and known issues. So, at first we had a bit of a tiff honestly over me giving him more information that he really preferred to tell me instead. Yet, mmmmmmm, it turned out I was "right" more or less on both... so he and I began to suddenly get along better as far as bedside manner. I was told recently by me PCP that ALL SURGEONS can be HORSES butts! That is their nature!!! LOL!!! Which is NOT true. I have several that are the best ever at how they treat the patient as far as their personality. Many also LIKE A PATIENT to kind of be educated as to what might be happening. So, I am in the process of trying to decide where to start, and whether to go to him "can fix everything" shop, or do I find local foot docs, hip doc, elbow and hand doc. I know as far as the hand/wrist, and if my lower back is with issues, and even the elbows will need Dallas doctors anyway. I know local doctors as far as my toe thing (tarsus tunnel) probably, and IF the HIPS need something that can be done here by my orthopedic doctor I saw Friday. But, the other stuff is way too highly specialized and we do not have those specialists here yet. In between all of this, I DID MAKE my DENTIST appts. I have several teeth issues that NEED REPAIR! I know if ANY procedures will need to be done, where I am put to sleep, they PREFER things like that fixed first. So, fortunately I had already made two appointments for a week from this one to get most of that done. Alas... here we are ... and possibly here we go... I have ONE MAIN ISSUE... WELL I GUESS A COUPLE... COMING UP END OF THE YEAR AND MEDICARE for 2014! & what my MEDICARE ADVANTAGE INSURANCE PLAN will go up on, change, doctors that may not take it and so forth... so TIME is not on my side IF SURGERIES need to be done. I prefer any of that IF POSSIBLE done BEFORE A NEW MEDICARE YEAR. It is either that OR WE DO HAVE SOMETHING NEW that is going on and it is just not BEEN FOUND YET! And then if the first is not the case, then am I facing a wheelchair, cane, etc... that is not as bad as facing the DAILY REST OF MY LIFE... UNBELIEVABLE PAIN... I CAN FACE TEMPORARY ACUTE PAIN FROM SURGERY.. I know that will "end"... it is truly temporary, BUT LONG TERM CHRONIC PAIN... is an unknown from one minute to the next... so PRAY FOR ME!!! Please... that some of this IS THE ISSUE, AND IF SO, MUCH OF I CAN BE FIXED... :) we shall see what this week holds. I see my pain doctor tomorrow to refill my pump. I am going to ask him about going ahead with the lower spine medication injections. He already talked about them a couple of weeks ago... thus I am sure he will be game for that for sure...

"Bearing" Your Soul - While Trying to "Bear" this Horrid Pain

NO, I am not completely deceased! But, I have certainly felt that way this past going on 4 weeks! Insanity, is the only word for it, besides however you can desribe, INTENSE,SEVERE, THROBBING, ACHING, AGONIZING, UNRELENTING, STABBING, SHARP - day, night... PAIN!!!!  Not meaning to be any where "not standing in faith" BUT, I am sure questioning my Higher Power about why I am having to deal through this horrid journey. I thought about something that I had read a few weeks back. We talk about "acute" pain. Like having surgery pain, or breaking a leg pain, having a baby pain, kidney stones, and etc. That type of "acute" pain, is more or less "temporary". I realize when YOU are having the PAIN, it seems endless. Yet, you begin to see depending on what is going on relief fairly soon for the most part. Dealing with that type of pain, is NOT FUN BUT, you can look in the near future and see that it shall pass. You will heal a broken leg, or get over a surgery, rid yourself of the kidney stones, have your child in your arms... so that type of pain can be seen as going away soon.
When you are in CHRONIC PAIN, you do not "see" an end. Not one hear on this Earth usually. When it comes to many illnesses and conditions that cause chronic, gnawing, sometimes daily pain of some, lots, little ... you KNOW even if it disappears for a short while, you will have to GO THERE again. The "pain sabbatical" in most cases will end, and you know whether it be a day, a month, a year .... or whenever, unless by a cure, or medications that totally 100 percent work, or by the Divine Being, you are healed... that pain is inevitable.
That is what makes a chronic illness so horrible to deal with. It totally can take over your entire world, it reeks havoc with your body, your mind, your emotions, your soul... every day, every where... everyone in your life... just about any and everyone that is around, are affected by this relentless "stuff" that comes down upon us like a huge, black cloud, and weighs upon us, keeping us in the valleys of despair, rather than us standing atop our mountain, enjoying the world.

BUT, many of us do KNOW that someday RELIEF will come, permanently. When we "reach" that other portal, the other side, another dimension, heaven, or whatever you want to call it... if we are believers in things such as that, we can be "guaranteed" complete RELIEF!! through and PAST ETERNITY!!! So, if you think about "chronic" illness and pain in that light... then like "acute" pain... the chronic is in a way - going to be gone. I totally realize that in our hearts, we would much prefer that healing right now, so our quality of life comes back from wherever it goes when we are this ill.

I understand that this may sound a bit "depressive" or disenchanted, yet I do not mean it to be. I was just for my own sanity, trying to figure out a way to "process" all of my stupid questions, of why, how, when, where, .... why is this happening to myself and so many "good" people, when will be see relief, how did we manage to get "picked" for this not so great honor, and where do we go with it, when the weight of it all, is way too heavy for our own shoulders to bear......




I guess it depends on what kind of "well" we mean, as far as how the visit with my orthopedic surgeon went. The Good news, if you want to call it good, being stuck with a very LONG NEEDLE in FOUR JOINTS good, is that he injected both hips, and my elbows. They felt wonderful until the lidocaine began to wear off. Now they are SORE from all of the medication going in and it will take until about Monday before the real effects of the medication begin. But, Hey at least he did help in that manner. IT of course may NOT help, it may help for months, years, or for a day. That is the problem with those types of joint injections you just do not know how long it will last, or help at all. I have had wonderful luck with some over the many years I have had them, and some just stopped helping. Once the joint is too far damaged, then even the corticosteroid stops really doing much. Then he did X-ray my wrists, thumbs, and elbows. We knew what we would find. Damage worse now than a few years back. Both thumbs have really gotten bad, and my feet are bad also and ankles. I have seen the X-rays of my feet and fingers and they are just worn down, with little or no "cushion" cartilage left, thus the pain and inflammation comes from that, the Lupus and the RA. HE suggested a foot specialist to possibly do surgery on my big toes. I have "Tarpal tunnel" in them, which is much like carpal tunnel in the wrist. He said that may in itself help my feet a good deal. But, on my thumbs I maybe either looking at them having to be "fused", or better would be replaced, just like my knees and shoulder. Not what I wanted to hear for sure. BUT, I expected as much. He did say I have bursitis in my hips, and since we had injected them before, I may get some relief from it again. But, I may have to have them done either X-rays or CT scanned, because they themselves have not been done ..... if anything, years and years ago. So, I know things have definitely changed since then. IF it came to hip replacements, he could do those himself. He did my knees, and he does hips. But, when it comes to the more advanced things like total shoulders, fingers and so forth, then I have to see a specialist of course. I have NOT been TO SLEEP again almost all night for the 3rd night or so. Really longer than that, but these past two nights, I really have been up almost the entire night. So, that is not going to help the pain and soreness. Oh, and he looked at my lower spine CT and all of the EMG and Nerve Studies done last February. He said he seems to think much of this hip, butt, leg, lower back pain... IS my LOWER spine. Since my neck was such as mess, even though the CT did not show it (there has not been ONE CT or MRI ever done on me that was really "accurate". Every time they get in finally for surgery, it is a total wreck in there, and thy can't see it usually on MRI's or CT's.. But, he knows what the knees and shoulders are like inside, thus he is pretty sure my lumbar spine could also be a larger mess than it is showing. Especially me with the osteoporosis. I did not know that it can cause pain. I knew it did if I got a compression fracture or the like, but even it as severe as mine shows to be on the tests, could be causing some of my pain. Right now I am in the "waiting" game of my pain meds. I have about 10 minutes to go thank goodness. I am just about ready to scream. The pain in my lower back and hips is horrid right now. Anyway, he also felt like my Rheumatologist should take a look at all of these tests, X-rays, and try to change my medication. The RA and Lupus are definitely still causing damage to my joints. So, we need to try and slow it down if at all possible. Half jokingly I said something to Jim yesterday afternoon, that I would look stupid and not get much "exercise" having to be in a wheel chair circling the drive way in the mornings, rather than on my two feet, even if I am have to "drag" myself slowly, at least I am up and moving. But, honestly I am FEAR.... fear that if we do not get some of this damage slowed down and the pain more in control, that is where I am headed for! I just can't fathom having to be on a cane or in a wheel chair. It scares the hell out of me.

Compassion From Strangers all over the World - There are still some incredible folks out there...

Sometimes life's battles seem too impossible and too difficult to bear another day. All of us, sick or well, have our own "demons", and daily struggles, and even when some may think they are quite small, when YOU are in the middle of them, they can seem totally monumental. When Chronic Illness and Chronic Pain, daily, grinding, fierce, wake up and go to bed with suffering or wondering when the next time you suffer WILL be. It is just fathomable it WILL happen again, thus the word "chronic" comes into play. Well, this past three, now going on 4 weeks for me has been all of that and more. I feel I have "lost" so many pieces of me right now, that I don't even recognize them. What makes that worse, is that I can't truly express it to anyone, because first of all, I do not want to have my closest spouse and family horrendously worried over my mental health, because my physical health concerns them enough. The pain, internal pain pump and all of the extra medicines, walking, or more like barely dragging myself around my drive way every morning, watering my plants, and mostly, NOT! NOT writing, not able to even FIND A word TO WRITE... like my voice is gone... that frightens me. Being so ill, you do not even feel like taking a shower, hell even getting off the sofa for a glass of tea is like going on a 3 day trip, and it just seems endless. I have expressed this episode, these flares, whatever THIS is now to my doctors, my Mom, my husband, my kids, and just about anyone else on FB or out in the world that will listen. And I am NOT a whiner for the most part. I may feel inside like a total loser, a failure, and I may internally fight those forces of evil that are certainly trying to get their best out of me, but usually I CAN do this almost BY MYSELF. Yet, not this time. This is different. This is pain I cannot even describe. This is fatigue, that has made my past episodes feel like child's play. I have "several" physical issues that have become the "perfect physical sickness storm" for me. Which after a very long almost an hour visit with my PCP last Friday, kind of make sense. Yet, how much longer can a person endure? How much more must I take? How much more CAN I take??? You are not usually one to hear me say "I am almost ready to give up".. throw in the towel, stop the fight... I am NOT the kind to NOT fight a battle that I KNOW that NEEDS to be fought! I am one to stand up and face the enemy, and take it on, full force... even if I am left drug out, sore, and tired, I LIKE to say I WON! That is when it comes to chronic illness... Lupus, RA, migraines, chronic joint pain, muscles that constantly hurt, the tired that is beyond tired... I am a battler of it all... and I have battled well in the past.
Yet this time is different. This one is more difficult, it is not the "usual" battle. This is not the usual “nightmarish helluva flare” that we anguish with for a few days, cursing it’s very name “The Wolf”, along with other chronic illnesses and pain… that finally slink away into the darkness in which they so suddenly sneaked upon us. This continues to be the ONE that feels as if it is here to stay, forever and a day.
Alas, someone (and honesty there are several) in my life that are praying for me, concerned and worried about me, and especially worried that the words “give up” keep cropping up in my conversations. As I said above, I feel as if anything that my life is worth right now has been all jerked out from under me, leaving an empty shell of what my existence used to be.
So, about a week ago my husband (not known at the time by me) so extremely worried about all of my states, mental, physical and emotional was trying to come up with some way that he could possibly bring me some renewal of faith, of hope, for he sees I have definitely lost that part of me, as never before. So, he knows about another web site, that is sort of like a Facebook type of site. It is and it is not a “social media” kind of place. I had heard the name several times and thought it was kind of a “techie” type of blog and group thing, more for the the do design and development of web sites and so forth.
Yet, he knew about it quite a bit, and went to research some way he could lift me up and let me know that many, many care, even though I may not even know it. I have that often on Facebook. We CARE about one another! We are concerned and worried when one of our flock is not well , whether it is physical, mental, emotional, having a tough time with life etc.
But Jim wrote a short “post” on Reddit, under a “group” of chronic pain board people, telling the a bit about my current severe flare, about how badly it has gotten me down, and since he wanted to show me that MANY care when I do not even know it, he asked them, anyone, if they would like to, please send a quick or long “message” to me. Whether they also had chronic pain, or knew of someone.. or were someone that just wanted to do a random act of kindness to someone who really needed a huge boost right now, up this STEEP mountain that is really keeping me at the bottom this time. He “expected” nothing, and he GOT EVERYTHING! People, at least 100 of them so far or more (in about 7 days or so) began to send in messages to “me”. Someone they knew little about, never “met” me, just knew I had a husband that was desperate to find something he could do to at least lift my spirits a little, or give me a slight sliver of a ray of hope and faith again. Thus he took the emails he got, put them in “talking bubble balloons” like you see in cartoons, and people also sent different pictures, or many of them did, and he is posting them on the foam backers boards in different places, with these pictures, their names if they sent them, and they are some short, but many LONG telling me how I should NEVER give up, that I had a husband that loved me more than life itself, but the main thing is that they care, and they care from all over the world! From Canada to the UK, all over the US, and all over the world, these messages continue to come in, from total strangers, that wanted to do something “nice”… a random act of kindness to help someone such as me. So, he presented me with 3 of these boards night before last. I was at the end of my rope and even though he did not have all of them together yet, he knew it was time to share his “project” of love.
Well, I cannot even begin to say in words how that has made me feel. Just the idea he came up with is just incredible! What a wonderful gesture of love, and of unselfish love, totally because he cares so deeply, that he went to all of this to show me OTHERS, even strangers truly care!!!! 
I am still just in pure amazement, for one, he went through all of this, so he coiuld prove to me others do care.! What it did was rebuild my “faith” in fellow man. It just seems that lately every time you hear the news, whether right here at home, or far away, something has gone terribly awry. From Mother Nature showing us her “true wrath” for the way we have neglected, abused, and totally ruined all of “Her”… the land, the waters and the air. We have made a horrid mess of Earth. People may try and bury their heads in the sand, and say “we” did NOT do it, and there is NO SUCH THING as greenhouse gases, the drastic changes in weather patterns, and all of these surreal incidents, from flooding to severe drought, from snow and ice, to extreme heat and humidity, from wild fires going insanely out of control, and killing as many as 19 of our great fellow humanitarians. Then just think of all of the other “human” error and horror around the globe. Go from the tornados and hurricanes,  to the greatest fall of humans caring about one another ever. Men rising up against their own, in every nation and on every continent. How many countries are at civil war now? How many “war” and battles are we, along with other nations are going on right at this moment? Just about every Middle Eastern Country is at war within themselves or at was with many of us.Greed is everywhere. From our own government, health insurance companies, doctors, medical facilities, and all around the Earth, greed, selfishness, and taking advantage of just ruining someone, breaking the bank, causing job losses, taking billions of dollars out of the hands of those who need it them most, greed, gluttony, selfishness, non-compassion, and down right evil exists everywhere you turn. Children, killing other kids, and how do those guns get in their hands in the first place? Where are parents? How can a parent let a baby die in a hot car? How can men take women for no reason, and keep them as prisoners for years right in their own neighborhoods? How can many leaders of nations do “genocide” on their own people? Why is it we must FIGHT over everything and we NEVER are able to make one simple decision? When it comes to the “welfare and health” of the people of this nation and others, they would rather allow someone to “die” on the hospital steps than to life their own fellow man a hand up. Money is totally been the ruination of this great nation. Greed has ran so rampant that even democracy is not here, just a mere shadow of what it used to be.
So, when I see everyday folks, all over the world, to a total stranger, sitting in a very small town in Texas hurting so badly she is more than ready to call it “strike 3”, give up, get on the sofa, under the bed, or wherever with the thoughts that I truly am given a “hand up” in how I feel about my fellow man again.
I am so totally blessed first of all to have a spouse who truly takes care of me. He even must deal with his own chronic pain issues due to a very bad lower back problem that he was probably born with. After years of strain on it, that vertebra is a total wreck. So, we must “help” each other when we can, because neither of us are in all that great of shape physically. Yet, he did something so kind, so totally a random act of kindness, that I am totally speechless at the gesture. I know he is making picture of the boards as he puts them together. So when all of the them are complete I will post pics of them. I will tell you people from the UK, from Alberta Canada, From all different states, places, walks of life, sent some one liners, but most entire letters, emails of how much they care about me, how strong I am and can still be, and that they are thinking, praying and cheering for me every step of the battle.
This is a wonderful story, and a wonderful act of kindness, that I feel should be “paid forward” in a way. Others, many others, including two families very close to my heart here in my home town, I found out just yesterday are dealing with some horrible situations, also physically. One of them went to school with me, and was in my graduating class, had cancer 30 years ago. Now, after all those years, they have found out it is back, and sound like with a vengeance. She is only 51 years “young”!!!! Then I found out that another family I have known all my life is suffering a horrible time with the Mom going completely blind due to macular degeneration, and she is not even able to drive anymore. Then her daughter, who I spoke with yesterday, is about 3 years YOUNGER than myself, and she has Parkinson’s!!! Here she is in her 40’s with Parkinson’s! That seems unreal. Plus for some reason I was not aware, she also lost her husband just last year to a full blown PE, Pulmonary Embolism! She was driving with him down the road and he suddenly became ill, and before she got him to the emergency room, he had passed away! So, we can just turn a tad to the “North, South, East or West and see things happening that are definitely worse than our things. Yet, we never can negate what we are going through. Because yes, other things may “seem” worse, yet when you or a loved one, friend so forth are suffering, ill, with Lupus or with any type of illness, pain, etc, then it is bad. So, we should always have compassion for others, but remember to have compassion for your own self also. Anyway, there is also another “bright” spot in this for myself. I did in a small way “get my writing voice” back. What my husband did so unselfishly to help me, and then what others did that is so profoundly wondrous, helped me to be able to write this. So, I may not seem to be able to grasp what I want to write for the book right now, but I have a sense of renewed hope and faith, that once we find out WHY the PAIN is so BAD, why I am suddenly so over wrought with what seems like the largest “flare” of symptoms ever, and get down to “fixing” things we can, or allowing the things that need to heal themselves do so, that my voice is still here. It has just taken a sabbatical, while I get well.

I also want to say to ALL of my FACE BOOK FRIENDS, EACH OF YOU, also MAKE A DIFFERENCE EVERY DAY IN MY LIFE!!! I pray I can do half of what many of you do to help me and feel those of you out there that truly care. We are a family, and always will be. So, I want to thank you also.

I still feel I have not found WORDS ENOUGH to express how touched I am with all of this. I just hope he, along with all of those wonderful and compassionate strangers shall remember they have someone who thinks the world of them in a very small town in Texas.

Rhia

"The Spoon Theory" by Christine Miserandino....

Jim reminded me about the "spoon theory" yesterday. It was "invented" I guess you could say by a brilliant woman with Lupus. She had tried for years to express to her very best, closest friend what having Lupus was truly like daily. Even though the friend "felt"like she really knew, one day they were having a lunch and the "spoon theory" was born. The lady has written a book called "But You Don't Look Sick". Her Name is Christine Miserandino & she has a website at. Here is the "spoon theory". For many they know about this, but for anyone that wants to be able to truly explain to anyone, loved ones, a stranger, anyone what having a chronic illness, such as Lupus is like  ... this is perfect....

 “The Spoon Theory” at    http://www.butyoudontlooksick.com/the_spoon_theory


Please take a few minutes and read this. It truly will inspire you with or without Lupus... and for anyone with someone they know with a chronic illness, such as Lupus, it will certainly bring forth a clarity in how life is daily for those like myself and many others out there... Hugs, Rhia