Every Year so many of us have a "List to Live By"... for the New Year. Some call it a list of "resolutions", "Changes", a new way, a different attitude, motivation for making things different, making what you want in life happen... Whatever you "call" it... we try to set the "tone" for our New Year.
Whether "chronically ill" or not... each of us want things to "change". Now, many of us may be completely satisfied with our life "as is"... but human nature gives us this innate intuition to never stand stagnant, to always want to evolve, to make our mark on the world, or at least our own home and community. As a whole, although when you hear the news it does not sound like it, I still feel "human nature" basically wants to "do well"... to help, to be that change maker...
As I have prodded through these past 7, 8, 9 or more years of chronic illness and chronic pain, I've noticed that it seems for the majority of us that are chronically ill, whether it is an Autoimmune Illness, Heart Disease, Cancer, or any number of diseases, syndromes and/or illnesses "we" as a whole tend to try even harder to "change" what that disease is doing not just to "our bodies and lives" but to all the others we see on a daily basis suffering from the very same illnesses. We tend to be more a part of the "change makers", whether that means a local community awareness, or a National Campaign and being an "Ambassador", Volunteer, Activist, a "voice" such as helping so many of our non-profits, such as The Arthritis Foundation, The Cancer Society, The American Heart Association, Lupus Foundation, The Pain Foundation, and the many, many, charities and organizations that "go to bat" to fight not only locally, in our states, but nationally to make awareness known within our Governmental Bodies, to get finances for more research, the race for a cure, for answers as to "why" some of us suffer so badly from such horrid illnesses, what causes them, how to treat them without destroying a patients life, and how to give people back their quality of daily living!
So, when our chronic illness and/or oain issues bring us to the place we no longer can "work" our jobs, or do many things we once could do, we find ourselves seeking a way to help STOP these diseases from ruining more lives in the future. With the technology, and how we have evolved globally, with a few key strokes, we can contact our state, our county, our city, and our National Government Officials. We can provide all types of very usual assistance without leaving our homes to "make that difference" we so want to make in life. I know some people that probably spend more hours a day now as a volunteer, activist, etc... than they did actually working a 9 to 5 job that nearly killed them... but we can "take off" for a week if we are ill, or work an hour a day, or a few hours a month.... however much "we" want to put into assisting these foundations, is so appreciated. And many of us, like myself have been even honored and rewarded by being sent to Washington DC to stand on Capitol Hill and tell our stories! So, activism, can be and is such a rewarding part of a chronically ill person's life. We feel we are "contributing" even though we may not be able to work hours a day, or leave our homes... we "make a difference"... and not even spend a penny... but give of ourselves and our time... which is definitely valuable... sometimes more than money... the value of "our time"....
I had been looking on Twitter a bit ago, and there was a great idea that I decided to not only to share, but to do. Take an empty jar, and each "good thing" that happens within the New Year, jot it down on a small piece of paper and put it in the jar. Then in the start of the next New Year, get those out and read them. As I said, all too often we "recall" all of the crappy, the bad stuff, that happens within a years time, yet we don't remember those "good moments" and maybe they are "small" but memorable. Then see just how many have filled that jar from that year before. I have already been able to write down 3 or 4 things and put in the jar, and this is the middle of January! Maybe I will need 2 jars to "hold" onto those good moments... those moments that help to make the bad ones seem not so bad.
So, the "title" of this post, is a bit deceiving in some ways. I gave the impression this was going to me more about my own "revelations" for the New Year, and the "tone" of how I "want" my year to be for 2016. I've never been one to set expectations to high, but I do try to give myself "goals" to achieve... yet I have also had to learn that when you have illnesses such as Lupus, RA, Sjogren's.... and so forth... those things you "want to achieve" may get put on the back burner, for those times you are in a "flare", or you are having surgery, or sick, or going to the doctors... there can be all kinds of things that interfere with those "good intentions"... and it is not that you may not achieve them... just not in the time frame you thought you would. I had wanted to be a published author for 20 years plus, and then was with two books within less than a year between them! My 3rd book, has been sitting here mainly completed on my computer, but needing to be put in some type of order now for gosh 3, 4 or more years. But, life and illness... have had to come first... thus the book WILL GET PUBLISHED, but I no longer "pressure" myself... Due to things beyond my control over the last almost 3 years, I began getting it together, then had to leave it... now it will take me weeks to even get back into where I am, what I have in it, and how I want to continue... and I will get there... but I have to feel well enough "physically" to be able to sit at the computer several hours at a time, hopefully with little interruption for weeks, at least 2 or 3... or I will never be able to "delve" into where I am, and where I want to go forward.... so I may not be able to do as much as I want on it, until I have the cervical neck surgery... I can't sit very long at the computer typing right now because of that disc... when it presses down on the nerves, and I have pain in my shoulders and down my arms into my thumbs... it makes it very difficult to "find my voice" to write...
It is different with my blog... I can write a bit, get up, do a few things, and come back to "finish" the post...
But, the "tone" for my 2016 is to try my best to get as far on the 3rd book as I can to prepare for it to be published. I also need to get myself back into "physical shape" and I mean back to walking when it warms up, taking the dogs out walking, and getting out of the house... but I also face at least the one surgery... and maybe two this year... my lower lumbar and sacral spine gives me hell when I try and sit for very long also... and after Friday's ordeal of driving and doctors in Dallas all day long, I have suffered with a great deal of back and side pain... hell I've wondered if I have another kidney stone, the pain has been so bad off and on...
So, the "tone" again is to do as much as I can personally to my home, bless it's heart it needs so much work, and myself... and try to "enjoy" each day whether ill on the sofa, sitting here at the computer writing, or online...walking my pups... walking myself... and hopefully spending several times this year for a day or overnight stay at Winstar! Gosh how I miss that Casino! I walk in and the world melts away, at least for that time you are there...
So, take time to "set your tone" for 2016.... make yourself a "good moments" jar... and in 2017 (when I get to trade in my Prius for a New Model) see how many of those truly make you smile.....
"Through my heart's work of writing, I share with you my complex journey a top the mountain, sliding down, crawling up, & living through the realms of Autoimmune Arthritic Illnesses. Taming "The Wolf" Thru each Day... One Step at a Time … Together We Are Learning to Survive. Please follow along, to New Beginnings - looking Thru the Window Pane of Pain in life where we shall find our journey leading us to - New Perspectives
Showing posts with label cervical surgery. Show all posts
Showing posts with label cervical surgery. Show all posts
Sunday, January 17, 2016
Setting The New Year Tone as I Deal With RA, Lupus, Sjogren's, Trying to Complete a 3rd book, Life, Family and so much more...
Tuesday, May 12, 2015
When Life changes upon a "dime"... how do you cope? "It is not easy to be... me"...
Further information on our friend and client in Seattle. He may have that portion of his skull that they removed off for even a year. He will have to wear a helmet to protect his brain during that time (which I had also read). They will "freeze" that part of his skull in a special way and then can put it back later after things are settled. They say that even though he is responding and seems to know everyone and so forth, he seems to have no movement in his left side of the body at all right now. What really makes this difficult on Jim, my husband, is that after the accident a year ago, he is also basically left with his left side also the one with the most damage. Of course Jim's is from the nerve damage of the spine being basically "broken" from C-7 through T-7. But he continues to "regain" more use all the time in little ways. The nerves can somewhat regenerate, even though just a few years back, they thought they could not. Researchers now know that some nerves can definitely "heal" themselves, it just sometimes takes months or even years for that to happen. Fortunately it seems that his "autonomic" nerve system is intact. Even though they have him on a vent, he is breathing over and above it on his own. So, it will be a moment by moment watch for him. We never really have gotten exactly what happened, but it appears the brain bleed was probably stroke related. So, only time will tell. I am sure the biggest concern now, is of course the swelling on the brain, and fluid, he is extremely "puffy", his face and all are so swollen that he cannot hardly open his eyes. But, also I am sure they are watching and treating him for another bleed of the brain, or a blood clot would be my guess they would be concerned about now... so please continue to say prayers for them. As I said he and his wife have been "clients" now for over 10 years. Yet, before that Jim and he were friends at least 7 or more years before that. They own an online retail store, and he also has a business set up on E-bay. So that makes this even much more difficult. They were kind of "a family" business and needed to ship out parts daily all over the world. So, his wife is probably just in a terrible state trying to keep up with business and feeling badly she can't be with him all the time also. AGain, much like Jim and I a year ago. I needed to be home taking care of things here, and there was so much to make sure was taken care of after the accident, and then split my time being with his in Dallas at the hospital also. It certainly was not a great time in our lives, and in all honesty, things will never be the same for us. It has really taken its toll on the both of us in so many ways... more than you can know... and more than what we even thought it would. As I had said we would have to find a "new normal"... well that new normal changes from moment to moment. Between my own health issues, and all I have to take care of daily, and then Jim's lack of being able to do so many things, and his disability also, we both are truly at times on overload... I find us sometimes going for days and not really saying much to one another. We seem to get to a place that we are lost in our own thoughts, and tend to keep them to ourselves. I know I feel as if I am walking on egg shells all the time, and I am sure he feels the same. There seems to be "drama" about something every day... and now here I face this very invasive discograph, later in the month, again I cannot drive myself from, and then what if I have to have back surgery?? That is just another issue we face, and how we will get through that? I probably may not be able to drive for a few weeks... and who will take care of the dogs, and feeding us, and doing all of the errands and so on... so you can see, and all of you that have been through or are going through similar issues can relate....
When I think of the song by "David Grey".... that is how I feel these days... "It's not easy to me... me"....
When I think of the song by "David Grey".... that is how I feel these days... "It's not easy to me... me"....
Sunday, December 8, 2013
Fatigue, Stress, RA, Lupus, Sjogren's - Holidays and Looking At The New Year!
Surviving Our Own "Impossible" Schedules with Autoimmune Arthritic Illnesses
All of us, and I mean those that are "chronically ill", as well as those "healthy as horses" - tend to try and live up to our own "no way, no how" over the top expectations; especially during this time of year. Annually, when Thanksgiving gets here... We are constantly pressing ourselves to do more, buy more, be more, have bigger, better, larger parties, more guests, a "prettier tree", more goodies, a "luxurious dinner", fit for queens and kings. We want to give our children a "Wow" of a holiday season! We love seeing their eyes sparkle Christmas morning! :) I know I did! I'm sure all of you did and do also!
Yet, what about the "we" in all of this "We Wish You A Merry Xmas"? When I say "we", I mean US, those of us "we's" that are extremely fatigued from autoimmune arthritic illnesses. I just got through sending an email reminding a dear friend of mine to "take care of herself". She suffers from the misery of RA, and a cross of other AAI also. So, I knew she was busy, with home, and with her volunteer work, where she is a "co-founder" and an active volunteer. When you are kind of a "co-chief", cook and bottle washer, no matter what type of "work" it is, it is WORK! Even as a volunteer I can attest that I am "trying" so much more with my volunteer work, than I probably have in many years! As much as I push myself on writing my books, I don't think I do that as much as I am doing in order to try and give a piece of me to help others. When you are involved with a fantastic group of folks, that ultimately share your exact feelings and goals, it does make you want to "be all you can be" and "do all you can do"... And that is NEVER a "bad thing".
I am so grateful to have another "pathway" to guide me into the realms of where I can make a difference for others that live with the horrendous illnesses, that seem to creep upon us when we least expect them to.
Yet, we also still in some capacity have our personal "holidays" chores. Whether you are younger, with a job, children, spouse, or even if you are a bit older, kids gone, and just the two of you, or like Mom on her own, there is always something that needs to be done during the holiday season, and for the end of the year.
I am already feeling the "stress" of my own expectations. I have a "mental" list, and it should be more like a WRITTEN on paper list before I forget half of it, of the "To-Do's" I need "to do". Let's see, my Christmas letter is still not finished, my tree or any decorations are not up. I have another batch of fruitcakes to make; along with cookies and fudge (if I date attempt it again this year). Before the holiday, I have a pain pump that will have to be filled, medications that need to be refilled, my Mom sounds like with her own issues with severe shoulder pain probably needs to get into our orthopedic doctor, and my husband is still waiting on the MRI results from his own severe shoulder pain, that they think maybe his neck. I have to get myself in order for a trip to OK, IF the weather allows and we decide to spend Xmas day there, rather than at home. I have my blog here to keep up, as well as doing my volunteer work for IFAA and I need to get a blog post written for Systemically Connected, which is IFAA's official blog.
I need to buy stamps so I can put them on these cards, and actually still have a couple of cards that need addresses. Never fails... either someone moves, or I lose an address... and then I am scrambling to get what I need to send my cards out.
I did get my cards out to the "Troops" and made the deadline, ahead of time thank goodness. Then of course there are those "errands", if you are buying gifts, that in itself is a headache. We are not really doing that much as far as "gifts" this year. Our finances as they maybe, have taken a "hit" between all of my doctor and dentists bills this year. Plus we still face whatever my co-pay may be on the hernia surgery, and we had to pay some on Jim's MRI, which are not cheap. After my other older I-Mac decided to go "feet up" on us unexpectedly, this new one was not an expense we were expecting. Same with our old vacuum cleaner. Another one of those not anticipated "out of your pocket" expenses. My old one "threw a belt" LOL... but the issue with that was "good luck" finding a belt locally for the stupid thing. I could have just ordered one, but in all honesty that "purple monster" as we called the old vacuum, was SO HEAVY, I just could NOT push it around anymore. Needless to say, I came in with a MUCH lighter brand new Bissell, that will almost suck the carpets right off the floor! :) In fact, with a couple of my older rugs that are just runners, and I did not pay nearly as much on, are losing their backing... it is just coming off of them because they are just getting old and ready to be replaced. Always something... oil in the car needs to be changed, the house taxes are in, thus a reminder those will come due shortly!
Then the "Happy New Year 2014" rings in with a new rush of a New Year and all of those "tasks" that also "ring" in annually. Taxes to pay, house insurance and car insurance to probably come time to renew. Taxes, which I do my Mom's Income Tax forms and filing, and all of the other 100 items that come in like a flash of lightening through the black ink darkness of a clear night's sky.
Alas, it is my time to begin thinking about my own personal "Agenda" for 2014. Call it a "Resolution List" if you wish, but I have one each year with some things that are probably pretty standard for all of us.
Well since I just posted on FB! I shall add it here to finish this post off and post it for everyone! You shall see what I've been doing since very early this morning ;)
Okay!!! One MORE project out of my hair;) I should not say that at all. I just finished getting my "annual Christmas letter" finished, printed and put in my Christmas cards! ;) LOL! I always "say" every year, Oh, I am going to "skip it" or make it shorter, and of course, that NEVER happens. It became a tradition many years ago by a cousin of mine in TN. She is older than me, so when I was younger, I remembered Cathryn's letter every year in her Christmas Cards. I loved it so much, that after I got up and was sending my own cards, I began the "tradition". I don't think I've missed any honestly. Not even through out surgeries, illnesses, etc... I've been fortunate enough to be able to get it done. :):) Anyway, I finished it, and I feel awesome to have them ready for stamps, and the post office!!! LOL! Of course, I have NOT put up ONE decoration yet. But, with Jim's shoulder/neck thing, and my stupid "hernia" thing... and now my Mom is having massive pain with her right shoulder - which I think is also her neck. I've got to get her into a doctor. She has an appt with our PCP tomorrow, but I know he won't be able to do anything, but send her to an orthopedic specialist. Then we are going to have to have out if it is her shoulder, or her neck. Mine was both! So, I know that will be a hard row to hoe with her. She is NOT a "hospital person".... I saw that when she was there just overnight with her heart monitor incident. Then with the wrist surgery, I thought I would NEVER get her to get it repaired. It took me months and months to get her to go and have it done. She uses "me" as an excuse... LOL!!! And that has to stop.... just because I have "illness issues" does not mean she can just "wait" and not have it fixed... We just have to work all of us around one another... talk about a mess... my surgery is scheduled for the 30th for the hernia... which means I will probably not be able to do much but be on the computer or sofa for weeks... esp. no carrying or lifting, well heck, how the devil am I supposed to survive if I can't do what I need to do??? ;) We always manage... but with Jim and his own neck..shoulder issues, it won't be as easy as usual... anyway we maybe all looking for "nurses" at our homes.... HAHAHAHA!!! I wish all a good rest of the afternoon... it is still COLD and nasty outside here... so I am headed to get stuff all ground up to make another batch of fruitcakes... well I hope... I am already exhausted. I got up at 3:30 this morning... and have not stopped since....
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.
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.
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How can our kids feel safe when WE as adults don't???? I fear Wal-Mart or just walking across the parking lot at HEB in my small lo...
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I really have SO MUCH to try & catch up here on, so I am going ton"Post"n some of my ongoing chronic health issues, things abo...
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I finally made a trip to Urgent Care with what I feel is a very bad Lupus and RA flare, but there are several "symptoms" strange t...