Showing posts with label life daily. Show all posts
Showing posts with label life daily. Show all posts

Tuesday, November 18, 2014

The Good, The Great, The Days you feel like NO ONE Gets IT!!!! I CANNOT BREATHE

I've just about had it with everything. I cannot stand when someone wants ME to be at their beckon call. But, when I do not hear a word and am suddenly "cut off" it seems, I cannot just hop up and fly off for 3 or 4 days for an event. I am really upset, hurt and pissed that I am "used" when they want me. Then they get me all hyped up to make another trip that is supposed to be the first part of December. Now I cannot get a response by email at all. It is like I am a "stranger" and Don't Exist... but if they need me in the future it will be expected for me to "jump" up and do exactly what they want and when, and fore go the thought that I am chronically ill, and I can't just take off at a moment's notice. And if I find out ANY of my "SO-CALLED" friends have had a thing to do with it, I will really be peeved.... but I can see a couple of them "climbing" the ladder of "fame"... by running over others to do so... anyway, I am just about finished with it all. I am going to take all of next year, or ever how much it takes, which maybe a year, less or a bit more, and write my book. I am sick of putting it off for "trivial" pursuits that now seem like it does not matter much what the hell I bent over backwards to do and help out with. I am no more than someone that is taken advantage of due to the fact of my passion about helping others. Then I am scooped up and heaved in a corner when they are "through" using me. I have been having horrid, night terrors, now for about 2 months or more... and last night really told it all. It was so bad, I was screaming and crying so much, I woke Jim up and he had to come out of the bedroom to check on me. Then it took me almost a half hour to truly settle down and figure out it was a night terror and not real. Yet, it did finally get through to me, when in my nights sleep, I am being put down, picked on, cast away to the sides, and everyone ignoring me, treating me like dirt, so badly that I could not even breathe... which woke me up, because I felt I was literally suffocating... and could not breathe... I am being "drowned" by the very thing I loved to do the most... well 2nd to my writing and blog... and that is my volunteer work... so I am bowing out for the most part, to allow those who choose to cram their "high heels" in my back as they walk all over me... (I saw this when I worked for a woman boss)... petty jealousy, wanting to take over and get credit for everything, taking someone's else hard work and saying it is theirs, and the subject matter goes on and on... well, I am pulling those damned "heels" out of my back, I am going back to write my 3rd book, keep up my blog, and keep to myself... so I may not show up or say as much here especially after the holidays are over. I feel I've been "used and abused" enough, and I am freaking sick of being tortured during my waking hours and it causing me to having horrid night terrors... it is time to get out of that "ladder climbing" crap....

Some of you may wonder why I get "caught up" in all of this. Well, for one thing I take my "advocacy", "Activism", my "Volunteering", my writing, blogging, and being An Ambassador, as well as a "general spokesperson" for those with illnesses, chronic in nature, those that we know will NEVER go away more than likely in our lifetimes, and so my dream is to "build a bridge" to future generations where they WILL have answers, as to why, what, how, when, where... and possibly a way to just say NO, to some horrid, chronically painful, life shattering chronic pain and illnesses. So, whether I am writing a blog post, or posting something in Facebook, or reading someone posts... whether I am "helping" a group, or Foundation... whether I am trying to help several causes and Foundations by "lending my voice and own personal experiences to them, in order to get OUR POINTS across to Congress, to the nation, to our own communities, even to our family and friends, when I am doing any and all of that, then I am serious about my "job". I don't take being an advocate for others lightly. I take it as I am trying my very best to try those out there, that either can't step forward, due to family, illness, lack of funds, or any number of reasons some people can't "lend a volunteering hand". There are those that are "shy", or they are raising families, or they are just too ill, to be able to either go to a Congressman's office, or send an email, and for all sorts of reasons people sometimes are able to get involved in that realm.

I can totally understand, because being a "voice", being assertive, putting your heart and soul on the line to speak with a member of the House or the Senate, or to ask for money for research and development for those who are researchers and may have the golden key some day to unlock and unleash something powerful enough to STOP the pain and suffering of RA, Lupus, Sjogren's, Osteoarthritis, MS, FM, CFS, MCTD, and the other host of autoimmune illnesses, or Lyme Disease, Cat Scratch disease that now has entered as a possible "means" by which some of us "got" these illnesses .... whether that is true or not, we need the people, researchers, money. the backers with funds, the corporations and foundations... the CDC... gosh the list is endless.... but we also need YOU and MYSELF. We MUST put our voices out there... if they "squash" us and tell us to get out, then so be it.... There will be yet another person that may not dismiss our "calling" and is willing to watch, look, and listen... 

I have been contacting my Senators and Representative (Federally) to invite them to an "Arthritis 101" meeting in DC the first week in December. Some of these folks are new to Congress, and we desperately need to "inform" them of just how important our medications, such as biologics, our not being delayed in getting a diagnosis, of getting treatment, and how critical it is for all patients with these illnesses have a fair chance to try and either go into remission, face less flares, not have to wake up every morning of your life, with stiffness, miserable fatigue, pain, and yet another day's fight to see who will when in the end... Will the "illness" take over all our spoon and then some, or will WE remain victor that day, and have spoons left over for the next day.

Life is so very, very, very SHORT!!! Many of us by the time we are about 25 years old, begin to realize that "forever" is not all that long... the 10 years, 15 years, 30 years... it all goes by too fast. We go from completely helpless as an infant, turn around and we are crawling, walking, and running. Turn around again, and we are driving a car, dating, and in college... one more turn and we are parents, raising our kids, and in the next turn they are grown, with kids of their own, and we have been out of high school for decades. You then begin to see "classmates" that are in the obituaries, or their parents are. We see the grey hair where the dark brown, blonde and red was. The wrinkles seem to come on over night. And within a "breath's space". we are as our parents were, feeble, not able to do, go, visit, travel and see the world through those young eyes. Our sight is blurry, our steps softer, and maybe not so sure, and you may even find yourself fighting with illnesses and what they cause, things you never would have dreamed they would happen just a few short years ago. 

I know I've thought back just 7 years ago. Never would I have dreamed I would lose all of my teeth, and need complete dentures. I didn't know I would have all of these implanted joints, many more that are deteriorating quickly, and may need a new implanted one also. Life has just gone by within the vast light and the vast dark, I stood in the gray in between and never gave a thought that I could not wear that pleather mini skirt, or my pleather pants again. I thought I would be in those 6 inch platform heels for many years to come. Little did I know that none of those would be true. That now I try to find shoes that are "pretty", yet they have to be half way comfortable. I can no longer wear some of those mini skirts, and tight tops... and I would never have expected to have a huge bulge our of my right side, where I have an implanted pain pump.  I never would have thought I would awaken to stiffness, pain, and sometimes so fatigued I just can't really do all I want to in a day. I find myself wandering through my own home, through my lists and lists, and wondering how I will do the laundry, vacuum, cook, clean, wash the car, change the sheets, get myself showered, get the pups fed, watered and taken care of, help my Mom with her things, and still need more time to do more things. I have a very difficult time "giving up" anything. Even though, just like here on my blog, or in my new book, I am writing, I HAVE NO CHOICE, I HAVE TO FOR GO something in order to have the time, the stamina, the brain power, to do what I NEED to do and what I WANT to do... and something will have to be put aside. If I had my way, it would be like it was in the late 90's. I could go to college full time at night, write, work full time, take care of the kids, house, yard, bills, cleaning, cooking, sewing, going out on the weekends, studying, and I just never stopped. I had the energy of an atom I guess.... I was a never ending ball of go, go, go, and that included exercising EVERY DAY, walking, go to aerobics, you name it... now if I get the laundry done, have enough time and energy to shower, you can bet before I can finish ONE task, I am exhausted and ready for the sofa instead.... and IT SUCKS...   

TO BE CONTINUED


People Taking Advantage of those that are Ill, Injured, and Life's Ridiculous Ways

Believe me everywhere I turn I am getting "chastised" for the accident. I am so sick of the "rich" and I am speaking of the "filthy rich" and the "government" pressing every nickel that we DO NOT have out of us. I had another incident this morning, that made my blood pressure rise 50%!!!!! Why the hell do they always want to take away from the sick, the people that already are living BELOW POVERTY LEVEL by 300%???? Ifaa Autoimmune Arthritis-Anthony you had better believe and you know how I am I WILL NOT stand around and allow them to just push us over the damned ledge and sink us like a damned wounded ship. I've had enough of being used, abused and taken advantage of. Even the business about this "new" doctor.... I can already tell he is a scam artist and one in the worst way. The very sad thing is, that HE GETS BY with what he does and is getting rich off of people's misfortune!!!! I can guarantee he loves seeing patients walk in that have been injured at work, or hurt in some kind of an accident of any kind. He "acts like" he is your best friend when all the while he has his fingers crammed in your pockets while he stabs you in the back. I don't care what anyone says, I can smell one of them, further than I can throw them... I have been more than once "used" even by the medical profession. The things I tell people sometimes, they just cannot fathom they happened, but they have. That entire ordeal about this stuff I went through due to the double vision, with that "specialist" in Dallas was no more than a freaking scam artist. He was literally running 50 to 80 PATIENTS A DAY through his office!!!! He had like 50 EMPLOYEES and took up an entire FLOOR OF A HUGE OFFICE BUILDING. Then he did a damned "surgical biopsy" on about every patient who came in. Plus he frigged up the nerve in the side of my head AND left a scar, which there should NOT have been one. Then to stand in that OR that morning, with me still on the operating table, and BLOCK out everyone to SHOUT, SCREAM, and THREATEN the nurse that was supposed to be taking care of me, it was literally insanity!!!!! If it had not been that so happened the anesthesiologists was still trying to awaken me, so he was with me. I would have been in that OR ALONE with that raving lunatic... and they even called security on him and he punched one of them in the face!!! So, did I sue??? Hell no... but I did report his butt to the Texas State Board of Doctors, and it went on for over a year... and the Board continued to update me, they even took my statement and I had to have it notarized... and they even asked me if I wanted I could have went to the hearing in Austin, but I was too ill at the time to make that trip. So, I am not one to just call out the hounds, and go for the throat when things happen... BUT I ALSO WON'T STAND AROUND AND BE STOMPED AND TREAD ON LIKE THIS EITHER... I just am so damned mad I could spit... I cannot fathom the audacity of some of this crap. And then people stand around and LIE to save their own skin. I've had 3 or 4 occasions in my life, I probably should have brought in the hounds, in other words, sued for what was wrong and unjust, BUT I DO NOT and still don't believe in doing something like that unless it is truly something like what is absolutely wrong.. if I walk into "Wendy's" and drink hot coffee and burn my mouth, well it is my own crap and not the fault of who served it, but when someone else is truly in the wrong, and they have forever altered not just the one person's life, BUT EVERYONE AROUND, mine, my Mom, his Mom, my family, friends, our marriage, MY HEALTH, then things need to be made "right", yet still we are being put through a meat grinder and ground up like WE did something wrong... that is what just burns me up... rather than feeling like the "victim" I feel like the "criminal".... sorry guys and gals, I've just had way, way, way MORE pressure and emotional drama, and mental drama, and physical drama than I can stand this week... I am sick and tired of feeling freaking abused. I am a person who believes for standing up for people. If I didn't then I would not be an activist, a voice out here in the nation, doing advocacy work, and being an Ambassador. I would not being writing letters to Congress, to the government, to those who represent us as people and giving them so much of my time, my brain power or what I have left of it, and all that I encompass. I do ALL of it because I believe in what is just and right. I believe all of us deserve a "qualify of life". I believe we deserve to live without these illnesses eating us alive every day, with pain, with stiffness, with fatigue beyond what anyone can believe, beyond the ability that most of us cannot even leave the house and go to the market, or shopping, or vacation that we don't suffer for days or weeks because of these illnesses. I WISHED I would have had the foresight to go into research or into the medical field in some way, before I got ill myself. I feel my "calling" has always been in the realms of medicine somewhere, yet I never really got that opportunity to live out that thing I felt should have been my life... a calling to help find a cure, medications, to help people feel better, or to be free of pain and suffering.... I had two other times that I should have "done something" ... and I didn't... the first was when I had the 4 wheeler accident... that was absolutely the fault of the manufacturer that the throttle stuck wide open and I had no "kill-switch" at the time, or no way to break it, once it stuck wide open. I was 26 years old. I lost most of my top lip, I lost a part of a front tooth, I was battered and bruised, and had to have two plastic surgeries. After that I was always and still am very self conscious over the scar on my top lip. I 've lived through that nightmare over and over again.. we should have went after the manufacturer of that damned thing, and at the time, just didn't really understand at 26 years old that I could have. I didn't die, and I was "wounded" which did take its toll on my "emotions" for a long time. For years I would hyperventilate when I got in the car. If I drove I was okay, but if someone else was driving I would have flash backs of the accident. The next time was in 2010 when the hospital ER almost sent me home, finally "admitted" me, and took out my gallbladder.... within 24 hours I was so ill, they thought I was going to die honestly. They rushed me to Dallas at Methodist, where I underwent I am not sure, at least 3 or 4 surgeries, for a "nick" in a bile duct. The "bile" and poison from my body was actually leaking into my abdomen, and into my blood stream... they went in 2 or 3 times to try and "fix" it... finally the 3rd or 4th time they did repair the place it was leaking into my abdomen and stopped the poison that was pouring into my body... but I had tubes running out of me for weeks and weeks. I came home with them still in... for several weeks. In all, I spent over 6 weeks in 2 hospitals, then had a heart attack the day I was supposed to come home from Methodist. I stayed another several days and had to go through all of those tests. Fortunately, my heart doctor said it was almost like what they call "broken heart syndrome".... all of the time I was ill, and many times feared I might die, took its toll on my heart, plus I gravely feared coming home because I was still so sick, I had not eaten one bite of food for 5 weeks!!!! They had something like 7 IV's going into me the entire time, and one of them was a special mixture of nutrients they gave me because I literally could not eat a bite of anything. I didn't even drink at all. The first thing I drank was some Coca-Cola a couple of days before I was to go home. From there I came home and had lost like 30 pounds, and I could not stand the smell of food at all. I went another couple of weeks living on drinking coke, and I didn't eat much of anything. Jim even brought home a load of "honey wheat" bread and I could not stand the smell of it, much less eat any... Anyway, come to find out that "NICK" in my bile duct happened when the surgeon took out my gallbladder!!!! LET'S JUST SAY HE WAS LET GO VERY QUICKLY, and very quietly. Even my own PCP has mentioned it since then on several occasions they felt I would not live, and at first they had no clue what was wrong with me. Even the issue of taking out my "gallbladder' may not have had anything to do with why I was ill... there was something very wrong, and the surgeon went for the gallbladder first, but no one has really ever came out and said why I got so gravely ill so fast, that I had to call 911 and be taken via ambulance to the hospital, and then why I was just totally "out of it" I was in so much severe pain, and so sick... then only to "seemingly" get better after the gallbladder came out, only to become almost gravely ill 24 hours later... it is a mystery that no one may ever solve and I should have racked the doctor over the coals on that one, because he DID NICK that bile duct... BUT at the time I was so terribly sick, no one thought about any of that... until months later after I got home, and very slowly got back on my feet... it was truly almost insanity.... so when I say I tell my stories and people are just thrown back by what has happened to me, they are all true, all happened, and now at times I may act like those things don't haunt me, but they do... my way of dealing with all of it, is to help others, be the writer that I am, blog, and try to stand up for those who are going through some of the same things or other things also... I realize even though I try NOT to think about it much, that my chances are much higher of passing away than some... I've had two heart attacks, I have RA and Lupus, osteoporosis, Sjogren's.... and so forth... so for all of those my chances weigh much more in the realms of not "making it" to a ripe old age, than some... all of us that suffer from these horrid autoimmune illnesses have a much graver risk than others.... Love you guys and gals... Rhia   

Saturday, May 31, 2014

In Memory of A Very Young Soul - Taken Much too Early from RA... May you forever be at Peace Ali...

It is with GREAT sorrow that we at IFAA report tonight that one of our volunteers, and RA patient, Ali McKenzie, passed yesterday from heart failure due to Rheumatoid Arthritis. Ali was not only a young lady, she was an intricate part of both World Autoimmune Arthritis Day 2013 and 2014, standing in without hesitation to run many of the live chats and ensure guests were well taken care of. Ali, we at IFAA are heartbroken tonight, and want you to know you are loved and will be sincerely missed.

Autoimmune Arthritis diseases are SERIOUS. Please learn more and choose to understand it's not the same as "arthritis".







This is just too difficult to believe. I had only gotten to know Ali for a few months, but with her living near my daughter in and around Corpus, we talked and got to know one another some. My heart just breaks as I find out she has passed away due to complications from RA that caused heart failure. This young woman had so much to contribute and was a talented lady of graphics, and of these illnesses and so much more. The world will "miss" her, especially "our world" of the IFAA, and all of us that she had touched during the time we have known her.

May you rest in peace Ali, and know you are so greatly missed by many. Rhia

Tuesday, November 5, 2013

The Mysterious "Lump" in my lower left Abdomen…

I have probably mentioned in posting that I've been dealing with a "lump" on the lower portion of my left abdomen. It was there about 2 months, and it seemed to be a bit larger and kind of "puffy". No pain, and I kind of blew it off at the time. But, not only did it remain, it was definitely getting larger. So, I showed my husband, and make an appointment, with PCP. Well, I saw one of his PA's. She did not seem like she could even find it at all. Even after I told her it "goes away" when I lie down, and it shows when I stand up… well she sent me for a sonogram in that area. The tech that morning I told him about the standing up, and that it I lie down, it may be difficult to find or even see. He aid me down anyway, mashed the hell out of my lower abdomen, and made me sore the next day. Yet they found "nothing"… well no way, it had to be SOMETHING!!! So, I went to my new Gynecologist last week. I asked her about it. She was kind of puzzled but she tried to see if there seemed to be anything that she may feel causing it. She did mention I had a lump, but she bought it could be an ovary that they left when I had the hysterectomy . Well, my understand was back then, they took the LEFT one OUT, and allowed the RIGHT one to remain… but that is 20 years ago and aback at that time I was not keeping my own personal medical records like I do now, thus I can't find anyone that can even remotely tell me where they are and how I would get that operative report. Anyway, still not being satisfied, I asked my heart doctor yesterday. She said she would definitely getting either back to my PCP or for another opinion. So, I called my PCP office, and I got in this morning… and as below… I was RIGHT!!! I said all along for one something is wrong and for number 2, I thought it was a hernia! Anyway, I am exhausted and my back is killing me. So, I will post more on this tomorrow a.m. :)



But, that is for ALL OF US! certainly not just myself… of course as I said partially but at least I am NOT CRAZY! A

after seeing 3 doctors that said they didn't have a clue about this lump on my left lower abdomen, I finally am RIGHT!!! There is something there. I have a damned hernia. Well, I am relieved to find out I'm not insane. But, I am not thrilled that surgery is the only thing to repair this. And get theism I have one of the right side starting. I told my doctor I though I felt a tiny one in the same place in the right, and she told me yes I have a small one that also should be fixed at the same time… so now I am waiting for a call from the surgeon's office, to set up an appt with him for consultation. Damned does it ever get BETTER???!!!!

Tuesday, October 16, 2012

Rising to the Occasion for My Readers (that are to come)

I realize that not one person has been "invited" or actually became a reader of my blog as of yet. There are many reasons for that, most of which although it has been "up" online for a rather long while, I have not been about physically for the most part of this past couple of years to think about sitting long enough at my computer to be able to write a blog. I may have been able to write some, here, there and yonder, but I know that readers, just like myself, want to read the latest and greatest. As a reader, you want to know the entire "agenda", not just a few pieces here and there. Thus, my goal was to find out what exactly all was wrong with me, (or so I hoped), then do what I needed to do, to get out of pain, as much as possible, and get as well as much as humanly possible. Although, anyone suffering with chronic pain and/or illness(es), realize that trying to get all of the facts together, then correlate those with all of the specialists, tests, medications, and research on the patients part if they really want to know exactly what is happening with their own bodies, that can take an extremely long time. The good news is we have recently made so many leaps and bounds as far as diagnostic tests, blood work, scans, more information and research to help doctors as well as patients understand the workings of these life altering, often life draining, and definitely life challenging illnesses or syndromes. As you have probably gained from this already, my "medical" issues are many. That includes Lupus, RA, plus degenerative joint and disc disease, as well as a couple of other Autoimmune Illnesses, Sjogren's, Raynaud's, along with other health issues including two heart attacks. The first was at the age of 40, yes you read that right, I did type 40 years old. The 2nd one, that probably could have been avoided if things would have been done differently, was actually 10 years later, at the age of 50. I was already in the hospital, and had been seriously ill with another health issue, and had the second heart attack mainly due to the severe amount of stress put on me with the other very serious ill condition I had been in for about 6 weeks prior.
If what knowledge I have now, I would have had back when I was 35, I may have avoided some of the issues with illness I have been dealt. There are times, and I must say fairly often times, that I get very angry about all of the years I spent at doctor's, countless scans, X-rays, blood work, even hospital visits throughout my life, from the time I was about 21 until I was 47, not one physician had ever indicated that all of the joint issues, the chronic pain issues, the severe migraines that plagued my life enough to cause me to be fired from a job I had been on for over 6 years, and I was terminated lying in my bed at home, ill, with a note from the Emergency Room doctor that I could NOT work for 3 days or so. There were many things in my life that either happened, and others that did not happen, or I did not get to participate in due to illness. But, what exactly was happening to me, no one could say for sure.
Being a woman that was having these types of health issues during the 1990's caused me even more grief when it came to the majority of doctors during those years. Even now, women continue to get things said to them like "Oh, you are just stressed", or "I think it is depression", or maybe you should change jobs, get a new husband, move out of town, do anything differently, BECAUSE YOU are the problem. It is just "all in your head". Oddly, men very rarely hear those words, "Oh, it is all in your head!" For the most part, men can walk into a brand new doctors office, with just about any type of symptom known to man, and I would bet on the average, those men are taken very seriously 98% of the time. You just do not hear a "man" or "woman" doctor for that matter, telling a male patient, they are stressed, depressed, and making up how they feel!!! Now, I am not putting down the notion that STRESS is a huge part of our health problems especially in the United States. With the "large picture" to "do more, be more, give more, work more, make more, have more.... more, more, more... both men and women, as well as many of our kids are very stressed out! The rapidly fast paced society we live in is enough to make even the most passive person be ready to pull their hair out by the end of some of our busy days, that seem to be 58 hours long, and still not enough time to do it all. So, both depression and anxiety are two health issues that do need to be taken very seriously. BUT, those two illnesses cannot be used as "scapegoats" for laziness on our health care professionals part to do the tests that are needed, no MORE but NO LESS! A 5 minute conversation, that is usually one sided on the doctors part, does not usually mean a very accurate diagnosis for a chronic long term life altering disease. These are not easy to diagnose, and they all have symptoms that can be similar to other illnesses. But, with the right doctor, that truly hears and listens to his patients, that does take time to make the right decisions as far as blood work, any scans or X-rays that may need to be done, or even a biopsy or certain type of surgery maybe needed in ordered to find out the entire issue. It also may take several physicians that specialize in different fields to discover, determine, decide, and come to conclusions together as to what is going on with a patient, especially when it comes to these chronic illnesses, that are often rare, and for the most part, not a great deal known about them... It also takes a patient that is willing to get right into the middle of the whole thing, look up all of the information they can, online, in books, at the library, through magazine articles, and then also willing to ask all of the questions that need to in order to get their own answers to suit them. For me, more often than not, no matter what is going on with me, let's just say as of lately, I began about 7 months ago having sudden "double vision". At first I did not give it much thought. I do not sleep very well with all of my health problems, so I thought it could be from lack of sleep. I went along about a month, and it was not resolving itself, so I did some of my own research as to the possibilities, finding out it could be a number of things. So, I went to my regular opthamologist, who does a vision check on me annually due to the Plaquenil I take for the Lupus. The medication can cause retinal detachment, and even though rarely, I still must have an annual check to make sure all is well on that side. I realized several years back my vision was beginning to get much worse, as far as reading and close up vision, but with my age getting around 50, that is not all that unusual. I had a thorough exam, and was put in a different type of glasses with "prisms" in them. All of their tests did not reveal anything wrong, but the prisms are used to help with those that have double vision issues. It took me literally weeks to get used to those glasses! I would get sick to my stomach if I went it to a large store, with lots of open space, before I got used to them. They just caused everything to be thrown off, from how it looked when I looked at the ground, bent over, read, or even watched television. It was totally crazy, but I did get the glasses, and they did help me to see better. At that time, my regular eye specialist wanted to refer me to yet another specialist, and in fact one I had never heard of up until now. They wanted me to see a "Neuro-Opthamalogist". I knew when I heard that title, first of all it was a highly specialized field. Secondly I just knew the possibility of finding one close that also took my insurance was going to be like pulling teeth! So, at that time, I was already facing some type of surgery (we just did not know exactly what kind yet) so I put the "double vision" in the back of my mind, wore the new glasses, then went on to have a 4 level cervical spinal disc replacement and fusion, which was done this past June. I had been living in a living hell with severe shoulder blade pain, pain radiating from the top of my arm, down and around to my thumb. I was not able to have much use of my right hand, and of course that is my dominant one, and it made life miserable. I had already undergone a had already had a complete "reverse shoulder replacement" in June of 2011, that was supposed to correct all of the weakness, pain, and give me back the use of my right arm. Yet, I was not able to even lift my right arm enough to put deodorant on under it, or shave under it. There was no way I could reach behind my back.The worst was when I had to stop the rehab therapy I had been doing because the pain was just too bad.  Then it was another several months of trying to figure out what was causing the right shoulder blade pain, the a pain running down my arm to my thumb, the weakness, and basically giving me an arm that was totally useless to anyone. Once again, I was dealing with a doctor, (and folks this is 2012) that absolutely despises any of his patients trying to "self educate" themselves on what is happening with their own bodies. He just hated the fact I went online, knew a great deal about that special type of shoulder replacement, he hated the fact that I knew about anything.Then when the shoulder implant did NOT in fact "fix" of all my shoulder pain. After 6 months of doing very well after that surgery, suddenly I began to have pain again down into my shoulder blade. It was a severe "burning sensation" that later ran down my right outer arm down and around to my inner wrist and into my thumb. Before that the majority of the shoulder pain and weakness had improved dramatically, and it had been coming along very well with me rehabing it at home on my own. One day 6 months after the surgery, I had went to put gas in my Mom's car (yes she cannot put gas in her own car - never learned how to) I went to twist the cap on to make sure it was locked, and I felt something like a "snap" in my right arm, in between my elbow and shoulder. It almost gave the impressions of a rubber band when you stretch it and let go. I even almost "heard" the noise. At first, of course I was very upset that I had done something to that surgical implant, like pull it away from the bone etc. But, at that time the pain I felt was more like a tight squeezing feeling just in my arm where that "pop" had taken place. I was definitely concerned about it, but I knew I was going back soon for another check up on it, so I thought I would talk to my doctor about it then. Well, within 2 days, my shoulder began to hurt. All of that burning in the blade itself was there, but my entire arm felt sore, it hurt almost like "bone pain" in the shoulder, and that sensation of burning ran down to my thumb. We went through X-rays that showed that everything was in place as it should be, as far as the shoulder implant and hardware in there appeared to be normal. Due to my "pain pump" (which I will talk about in another post) I am not allowed to have any MRI's... ever... thus I went and had a CT scan along with a myelogram of my neck. I have had neck issues for the majority of my life, due to a 4 wheeler accident that I had when I was about 26. But, in the past 4 years or so I have had a great deal of degeneration of several of my discs. The scan did show some of the damage, but the doctor was still not really satisfied with just those scans and X-rays. So, I went through a nerve conduction study (NCS) and an electromyogram (EMG) which revealed that there was significant nerve damage. Yet, even with that evidence and what the CT had shown, it still was not exactly apparent if my CERVICAL SPINE was the cause of my latest shoulder issues. I knew I had neck problems. I had 2 other MIR's from 2006 and 2007 that showed the degeneration of several discs at C 3,4,5... then in 2007 it was those along with C-6 that also was in with the entire bunch. Even though there had been no bone spurs and so forth showing, the evidence of the specifics of symptoms and pain I had was sufficient enough for my Orthopedic Surgeon to feel like the problem was definitely nerve impingement coming from the herniations from C3 through C7 actually, with evidence of two discs entirely needing to be "replaced" (more "foreign" parts to add to in my body), and probably fusion of all 4 of them together. So, after feeling just a year before like I was "through" with surgeries for hopefully a long while, I was not only facing yet another major surgery, but one I had NOT wanted to ever even have to think about, and that was any type of spinal surgery. We have so many horror stories, and all of us have heard them about "failed back surgery", (they even have a diagnosis of "failed back surgery", just like a diagnosis of arthritis, or a torn knee cartilage), that I had always said I would NEVER no matter WHAT EVER have any type of surgery on my neck or lower back. Even though I do know several people that have had lumbar or cervical surgery and came out just fine, we usually have many more just the opposite. From just talking to someone in the local market to what we hear on television, and all of the massive amounts of information on the internet, we are inudated with more negative than positive results. So, this one was extremely difficult for me. I argued with myself over the subject for a couple of weeks. Yet, when I weighed all of the facts together, which #1 was I could no longer live with the pain, #2 the spine issues were only going to get worse, never better. Without going through with the procedure now, would mean I still would face it shortly. So, the option of putting it off, was kind of took off the table. Thank goodness I did listen to my doctor, to Jim, and moreover to myself. Now I am happy that I made the decision to go ahead and have the cervical disc replacement and fusion done, or honestly I would not be here typing this out. I got to the point I was not able to stand the pain in my shoulder blade as I tried to type. I would not be here 5 minutes even just checking email, and that intense burning began. then it may last hours or even a day or more, when it got started. Everything seemed to aggravate it, whether I just had the arm by my side walking or I was trying to use it to clean or stir something in the kitchen. so, even though it was a great deal to go through, not being able to drive for 6 weeks, well actually 8 for me due to having the "soft" bone where the screws were that hold the "hardware" in my cervical spine. I also have osteoporosis, which is extremely bad, due to y "genetic" background for the first part, and for the second due to having to be on Prednisone, even a small dose, has also caused the issues of this illness to be even worse. I was totally shocked when I had a bone density test about 3 years ago. Never did it dawn on me I would have any issues with that kind of problem. But the test came back actually "severe" as it can. So, I went on medication for it right away that I take weekly in a pill form. "Fosamax" is the brand name for the medication. they have just came up with a generic brand, which saves my insurance and myself some money for sure. But, it does not even really "repair" the brittle bones, but it does make some of it harder so that a fall, or something like that may save me from a horrible break in my pelvis, hip, wrist etc, But, of course NOT falling at all is the best. Yet, with all of the issues from RA to Lupus, to just have all of the implants can cause you to be more apt to taking a fall without being extremely careful. Anyway, I endured the 8 weeks of that hard collar, not being able to drive or bend over, and other things that I was so used to doing I could not do. One thing that was a positive light from the surgery well before I began to see results from it, was the fact I REALLY needed to WALK and QUIT SMOKING. I had already basically quit smoking anyway. I am what they call a "weekend smoker". I am able to take a puff or two a day, and nit have to smoke anymore than that. the walking, well, I already have been an avid exerciser, and ride my inside exercise bike for 45 minutes to an hour daily, without miss for the most part. But, walking was something highly suggested on all of the sites that talked about healing from the cervical surgery. Since I could not drive to my regular walking park,  one morning I started walking up and down our long driveway. I am fortunate enough that we do have a fairly long driveway, that with about 35 to 45 minutes gives me quite a workout. I started doing that just after the surgery and have never stopped. I religiously walk, no matter weather, unless it is extremely cold or rainy, I walk, which is in addition to continuing the daily bike ride also. So, I get my exercise in daily, which I am quite proud of. I look forward to the sounds of "Matchbox 20" in my ear, and that "trip to anywhere" I want to go for a little while. I maybe silent and absorbed into thoughts or I could be singing, or more than that talking to myself about one think or the other going on at that time. I realize often that even though I feel so weak, and fearful, I am forever more strong especially mentally and emotionally with every medical thing that comes into my life that I have to endure...I close this one and a new subject comes soon... I will begin to publish "daily" pieces even though I may not finish them at that moment also... but complete them in a day and then begin another. I want to keep this interesting for YOU the reader, as well as try to enlighten you on the aspects of life with a Chronic Illness.