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

I Just Cannot Fathom these number of Pain Prescriptions being written and used when a "true pain patient" must almost "give blood" to get a script!!!

This just blows my mind still. I posted it on FB, but Iam still reeling from the numbers they claim of scripts that are NOT for true and legitimate chronic pain patients! As I say below, my gosh it takes an army for me to get my medication, or it did, until I got my pain pump put in. I had to follow very strict guidelines from my pain dr and I saw him frequently, if I wanted him to help me try and be at least half way able to not be insane with pain. As I said, so many pain specialists will NOT see you for "cash"and if they do they charge an astronomical fee and then these medications are EXPENSIVE! One script can be well over $600.00 even generic! So, how would anyone be able to afford the visit and the pills? Insurance sure as hell will NOT pay for ay more than one visit, and you sure are not going to get by with legitimate insurance going to more than one doctor that gives you these meds. Then most pharmacies look at you like you are an ADDICT even if they know you very well. Even afer using the same pharmacy for many, many years and they know ALL of my health issues, they would be extremely leery for me to come in with more than one script such as this, unless it was something dire like a surgery etc. Even then I think they would question it. And I think WG, CVS, and many of the pharmacies even here in this small town keep "dibs" by checking up if they suspect someone is using more than one of them and it is for pain meds for cash... This just seems crazy to me.... I still think this is some kind of "conspiracy" from the government or some lobbyists or something to make it almost impossible for "REAL chronically ill patients to live a life with some quality"!!!!! The seem to enjoy making it almost impossible for us to get ANY meds not just pain meds!!! Hell I had to beg, borrow and go through hell to get the medication to make my mouth moistened since the Sjogren's is rotting my teeth away! The insurance denied one of the meds, and I had to go research my insurance and what they "would" pay for, then ask my doctor to please call that in instead, because the insurance did not want to pay for the other one!!! It took me two hours or more to find out what they would pay for, then I had to disturb y doctor again due to the insurance being stupid!!! And literally even though I have been doing everything I can to keep my teeth and mouth healthy, I still have at least two teeth they probably have to be pulled due to them just falling apart and several others that hopefully they can "patch" and keep together for now!!!

I tell you it is lunacy! PLEASE SIGN THE PETITION!!!!!
I just read an article about people on pain meds "doctor shopping" to get pain pills to sell. What I CANNOT figure out is HOW THEY AFFORD TO GO TO THAT MANY DOCTORS??? You can't file insurance for all of those scripts. The pills are ULTRA EXPENSIVE, so how do they afford to fill as many scripts as they are saying they do??? I have to pull teeth to just get ONE script actually filled out by a doctor and then a pharmacy to fill it. In fact my Pain dr. will ONLY allow you to get a monthly script from a specialist pharmacy and he will only do it there, and they have to mail mine to me from Dallas. I never see the script. He fills them out, that pharmacy picks them up fills them and then they mail mine since I am 40 plus miles away! I know HOW EXPENSIVE these meds are!!! I also know "real" and Legitimate pain doctors will NOT even see "cash" patients many times. And if they do, you jump through many hoops to ever get a script. One visit with mine if you were to pay cash and not have insurance is 300.00!!!! Then any of these meds are 600.00 plus a month!!! So, how they hell does this happen as much as they claim??? I think they have "off" numbers or they exaggerate this! Read this article and see what you think!???? 


http://healthyliving.msn.com/health-wellness/drug-addicts-dealers-are-doctor-shopping-for-pain-pills




http://www.change.org/petitions/time-for-congress-to-fix-medicare-for-the-people-fix-medicare-stop-fraud-and-misuse-pay-good-doctors-as-they-deserve

It is Just Crazier every day with Insurance, Medicare and the Government!

I appreciate all of you signing the petition! :) Thank you so much! I just read another extremely disturbing article in our own Local Paper. Our CITY employees are having to bear a 23.6 PERCENT INSURANCE PREMIUM INCREASE NEXT YEAR!!! This is also due to the AFFORDABLE ARE ACT!!! How can the government call it AFFORDABLE" when we are going to GO BROKE paying for it??? And our doctors are going broke because THEY are not getting paid!???? The premiums here in town for our city employees are going up $50,000.0!!!  MONTH!!!! Not a year folks!! A MONTH! Their deductibles are going to be 1,500.00 for an individual and 3,000.00 for a family!!! This is insanity!!!! I need to let people know it is NOT JUST MEDICARE people it is ALL of us with families and our own selves to INSURE!!! I almost passed out when I saw this article! First of all, our community WANTS to support our employees. YET, we also NEED to balance our own budget! I have to say our town does a wonderful job at that. Even after the tornado disaster, and I know that is going to hit hard too, I know our towns people will make sure our budget is on track. but, to have to pay out of pocket over 50,000.0 MORE a MONTH to hell insurance our employees, then they pay premiums along with having to endure deductibles that high... PEOPLE WE HAVE TI STAND UP AND SAY THIS!!! IS !!!!!! ENOUGH!!! NO LONGER can we continue to sit and allow the government and the insurance companies to ROB US BLIND all the while WE DO NOT benefit from all that comes out of our pockets! I URGE AND BEG ALL of YOU TO SIGN THIS PETITION! IT IS NOT JUST FOR MEDICARE PEOPLE But for EVERYONE who pays premiums, doctor bills, and has to endure going broke if you "get broken"... they do NOT care if you are ill, many of them think well, we will let you die! Honestly, that is how I think many of them feel on Capitol Hill. So, if you want make another petition!!! Get on the band wagon if you are seeing ridiculous premiums and no paying of your doctors! My husband came in from the doctor today!!! HE has NO INSURANCE! So we PAY CASH! AN OFFICE VISIT EVERY TWO MONTHS for him to sit down, our doctor walk in, ask him, well how is the pain? Jim tells him< "the same". The take his vitals and send him on his way for what is now 125.00 OFFICE VISIT!! FOR ABSOLUTELY 2 minutes! But, due to the insurance companies and Medicare NOT paying, the doctors have to price gouge those that pay cash! And they know WE CANNOT AFFORD IT! IF I did not get Jim's meds for either free online or here at the 5.00 pharmacy on the others, there is NO way we could get his medications! And if we had to pay for MINE!!!! I can say that many of mine are anywhere from 300.00 to 1,300.00 a MONTH!!! And I have about twelve plus all of the over the counter stuff we buy, Nose Strips, Tums, Allergy meds, all kind of Vitamins, and we added the B-12 to the list today, which is high if it is the sublingual one! Then you have aspirin, Aleve, Advil and even in generic it is still expensive when you add it all up. The over the counter stuff is just as expensive as the scripts! So, basically WE are SCREWED and TATTOOED any way you take it!
what happened to the days of bartering a chicken for a doctor to COME TO YOUR HOME AND SEE YOU??? They would pass out if they thought they would have to make a "house visit"! But, you really can't blame them, they have to CHARGE LIKE HELL TO GET ANY MONEY IN RETURN! ALL OF IT IS NUTS!!!! INSANITY!!!!


http://www.change.org/petitions/time-for-congress-to-fix-medicare-for-the-people-fix-medicare-stop-fraud-and-misuse-pay-good-doctors-as-they-deserve

Welcome News from the World of Lupus - !!!!

http://www.lupusresearchinstitute.org/lupus-news/discoveries/13/07/15/lupus-research-institute-advocacy-secures-2-million-appropriation-lu




Wanted to share this awesome news from the realms of the Lupus World! Our voices have been heard!!!!!

Wow! Now I am Anemic!

If it is not one thing it is the other...

Okay, here is part of the deal I think with me, health wise. First I did call my dentist and they will see me the 1st week in August. They are going on vacation until then. So I told them I would be extremely careful and try not to crack anything else off of these teeth that seem so very fragile. Next, I called my PCP and got the medication for dry mouth. They have two. I had been on Evoxac by awhile ago, and should never have stopped it I guess. I thought maybe it was not working but now I look back, it was probably helping much more than I thought. So, needless to say my insurance AGAIN decided they did NOT want to PAY even for the GENERIC! And it would cost me 300.00! So, I got on my Humana site, and finally found out they are supposed to pay for the generic form of Salagen. So, I called my doctor back, and told them. They did call me in that one instead, so I shall see if the pharmacy was able to get that one paid for. Damned I feel like crap and I am STILL fighting to get meds! They DO NOT CARE if my TEETH ROT OUT OF MY MOUTH!!! Just another example of Medicare/Med. Advantage plans and bull!
Then I got ANOTHER CALL FROM MY DOCTOR, late yesterday afternoon... I am severely B-12 deficient, in other words I am severely anemic. Which would certainly explain my symptoms being so excessive and lasting so long... the severe fatigue, lack of appetite, being so pale, not able to put one foot in front of the other, even the pain in my muscles, and everything that is "a Lupus flare" are also signs of anemia. The "brain fog" is another. They wanted me to come and begin injections, but I asked since I felt so badly if I could do it at home with over the counter B-12. She reluctantly told me I can try, but if I am not better within a few days, then I have to do the injections... I have not been anemic since my daughter was born 29 years ago, so this is strange for me. It has me concerned. I know it does go along with Lupus a great deal and there is "pernicious" anemia and several others, one of them is actually an "autoimmune" type of anemia, that often does come with Lupus, so I found that interesting. Anyway, as BAD as it sounds at least I am NOT crazy!!! OR if I have I also have SOMETHING wrong other that "it is JUST LUPUS"... I get so sick of hearing that "Oh, IT IS just YOUR LUPUS" acting up! the term "JUST" and LUPUS seem almost sacrilegious to say together. So, keeo my in your thoughts and prayers. I feel like total hell! I just am so extremely fatigued and I have all of the other symptoms of anemia and the Lupus flare, thus I feel like a rung out dish rag, as my Dad would have said... or he would say "pulled through a knot hole backwards" whatever that means...
Alas, bear with me as I try and work on this Medicare thing, the group for it and the petition. I REALLY COULD USE SOME OF YOUR HELP!!! PLEASE HELP AND SIGN IT, THEN pass on to your friends that you know are also wanting to see Medicare back in the right shape it is supposed to be in. Miss all of you... I spend most of my time after early in the am... on the sofa watching horror movies on Netflix... I hope this new medication we are getting today gets me up and going very soon. I HATE not feeling like doing anything, and the brain fog is just horrid....


Wed. the 17th more after yesterday....

Yes, it can be "deadly" honestly.. thus the very reason it is called "pernicious".. the definition of it is basically "deadly". I did Venetia.  Thanks  :) I read the "wikipedia summary and it does give a very good look at it. I realize that all of the symptoms I have had lately, even th pain in my hips can be caused by this. Jason I am like you though... I am not sure why, unless it is the Lupus, that I have such a sudden drop in my B-12. They check it and about 4 months ago it was on the "low side" of being "okay". So, why within 3 or 4 months all of a sudden it dropped kind of concerns me. but, it is also a type of autoimmune illness, thus Lupus I am sure plays a role in it. the PA that saw me last week noticed my mucus members in my nose and mouth were very pale, and I was very pale. Then all of the symptoms of severe fatigue, nausea, the leg and hip pain, not wanting to eat, nothing tasting good at all, and I have even been all of a sudden kind of "depressed", but not like regular depression. I thought I was just upset from being ill so long, but I have been crying when I try and walk in the mornings outside, and I can't even stand to pick up one foot I feel so bad. But, Jim has caught me several times in the past 10 days outside sitting alone, or walking (or trying to do my early morning walking) and I am just boo-hooing. Yet, not like a feeling of "depression" of the regular kind. I looked it up and sure enough it is another symptom of this B-12 deficiency. I am getting some of the sublingual B-12 stuff today to take. They gave me the injection yesterday, BUT then did not say a word about giving me more. I read I was supposed to be an entire "set" of them for like a week, then slack off to like two weeks, then at least 1 monthly OR I need to take the oral ones daily forever. So, I am not sure where the mix up is, but I see my regular doctor there on the 1st of August. Unless they tell me differently, I am going to get the oral stuff, take it daily and then I will have a long discussion with him about all of this. He happened to be gone last week, so he was not there to find out immediately what was happening to me. I think he would have probably recognized due to knowing me so well, that I may have needed either injections immediately, or he would have been quicker to diagnose my issues. He knows my total situation so well, in fact he was the one that actually "found" my MCTD, Lupus etc. Had I not had him to be so astute in looking at me, and what all of the issues I was having was being caused from it may have been years before I finally found out, if at all. So, he totally can almost "tell" as soon he as sees and speaks to me what the issue is. He was the one that also found the rare thing with my myoglobin, which is still high also. So, I will make sure we do speak about all of this in August on the 1st. Then I will let my Rheumatologist and so forth know. I had a spell right after the injection that worried me a little though...we let the office, Jim took me, because I just did not feel like driving at all, and we started to the store, and I began to feel cold/hot and clammy. We picked up a couple of things for dinner, and when we got home... I was sweating but had the chills. It really concerned me due to the Humira and I have to watch so closely for infections. I had not ran fever, but that "chilled" yet hot, and clammy does not sound great... Anyway, it may have been our weather. It had been cooler here but the humidity is off the charts... and I got kind of cooled off in the doctors office, then out in the humidity, then back in the house, with our ceiling fans running and the air on... and I happened to have had the fan pointed at me sitting on the sofa... thus it could be just getting a little sweaty due to humidity, then coming in and the fan on me... but I hate when I have something like that happen... anyway, I hope the B-12 clears up some of this freaking fatigue. I can't even pick my arms up to type... they feel so heavy also... it is insanity... and I thought the Lupus fatigue was bad enough... then add this onto it... not fun!

Fear of Disease Getting Worse or Am I Mentally & Emotionally Giving Up?

As I began to think about this so early this morning, I have had a very "heavy heart" lately. I have not really said much to anyone, including my husband or family, but I have been getting increasingly fearful that either these illnesses, the Lupus, RA, Sjogren's, and so forth are either becoming much worse OR my emotional state and mental state is that I am beginning to just "give up" the fight. I have tried to get myself "psyched" up over my 3rd book, and now giving the Congress and government a fight over all of the Medicare mess they have us in. Yet, I just cannot pull my physical or mental state out of the severe fatigue, the place I just cannot get done what I want to get done... due to my feeling so lousy, in so much pain, for so long now. No one can truly know from everything I have been through what the hell is REALLY wrong with me? Why even with a pain pump internally implanted am I suddenly in severe pain? Why are my joints more stiff, like they are "gelling" on me, and the pain in them is horrible? Why are my teeth having more cavities than ever, and seem to be crumbling in front of my eyes? Why do I not feel like going out to the store, doing laundry, cleaning my own home, and honestly doing anything. I feel TOO tired, TOO fatigued, and just too ill to even care if the rugs are vacuumed or the floors are mopped. I don't care what I eat, it matters not. Nothing tastes right anyway. I do not feel lilke even sitting in this chair to write, or even honestly read emails. I could care less about doing my coupons etc, and just have to literally make myself go outside and walk... going outside to walk, water my plants, and watch all of our birds that have nests are are hatching are about the ONLY things I care to do. I don't want to go to my Mom's, Lord knows I do NOT want to go to a doctor, and I desperately need to see a dentist and both of us get glasses, but I do not have the energy to muster to go and have the measurements done we need so we can order our glasses.
Right at this moment, I could either scream or cry... possibly both. I feel like I am just about worthless. I feel I can't even help myself, much less help anyone else. I know when I get ill or have a severe flare or both at the same time, I go through these times... yet this time it feels totally different. I know I always care about what the house looks like inside... no matter how horrible I feel. I will try my best to clean no matter how sick or how tired I am.
The brain fog is horrible. I do well to remember my own name. I have had it for a long while, but it seems to get worse each time I have a bout with it. I have gotten to where if I am slightly interrupted when I am saying something I totally forget what I was saying. My notes I even forget now.. stuff that I usually can remember, I can't to save my soul, as they say. I feel like my entire life, body and emotional realm is just fading away in front of me. Everything I loved to do, does not even interest me.
Even being here and trying to help others that has always given me a driven purpose, has just been not totally within my heart. I go through days of thinking no one even hears a word I say, or does not care. No one wants to listen to me anymore.  I feel as if everyone else has grown tired of listening to my constant whining and griping. It seems I continue to develop some "new" sign or symptom. One day it is my teeth, the next ulcers in my mouth, the next fatigue, the next pain and stiffness, another something else... continually a viscous circle of illness or insanity one... I am truly beginning to wonder which??? I feel like I am going totally nuts..

See Petition I have began to send to Congress, The President and the Woman Over the Medicare program..

I am still working on the petition but you can go ahead and sign it at:

http://www.change.org/petitions/time-for-congress-to-fix-medicare-for-the-people-fix-medicare-stop-fraud-and-misuse-pay-good-doctors-as-they-deserve#


Please go ahead and sign. I will complete the rest of it over the next day or so, as I get back on my feet from whatever has me down and ill. I appreciate everyone's help on this... please tell others to sign also....Rhia