I saw my Neck surgeon yesterday, and I told him that I thought I had "bursitis" in my hips, they both hurt so badly, no matter If I walk, don't walk etc... but he says it is my lumbar/sacral spine, as it has been, just getting worse.
So, I may try to have my pain meds "upped" just a bit, until at least another 6 weeks. He said my neck is "okay" as far as he sees for now. He said of course he can't tell how "fused" the fusions are, but so far, he told me "I am doing everything right" and to keep doing what I am -
he told me I could drive with either of the neck braces, and that when I am out in public that I really need to wear one or the other, and to continue to use the bone stimulator, and "hopefully" my neck will fuse, then we MUST take action on my lower back. I've had problems for years, and it is really progressing... the pain is horrible and effects my hips more than anything... they have hurt so badly for the past 4 weeks almost that I just want to scream.... plus I am having other issues that are caused from the lumbar spine issues....
So, I know I face that.... but I heard a "little bit" of "hope" yesterday about my neck, yet he is still extra cautious wanting to give it all the time we can to heal properly.
Showing posts with label lower lumbar spine. Show all posts
Showing posts with label lower lumbar spine. Show all posts
Wednesday, July 19, 2017
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...
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.....
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.....
Thursday, August 6, 2015
Life with Autoimmune Illnesses, Lupus... back sugery, dealing with chronic pain, US Pain Foundation and September Pain Awareness Month, Proclamation, family and coping
Things here are still really insane... it "seems" that my intestinal tract "maybe" improving... I hate to say that and jinx myself... but yesterday and last night and so far this morning it is much better than a week ago... but I still have Mom and her injections to deal with, I still need to get the chest X-ray.. I hope and pray that is 2nd round of antibiotics will completely rid me of the cellulitis... I found another "lump" on my right thigh a couple of days ago, and I was praying it was not more - but I am on the Rifampin and the other one (can't think of the name of the moment) LOL.. but between lack of sleep for nights and nights... and the heat, and stress, worry... my mind is about null and void anyway... Good news!! I am okay for the City Of Ennis to go ahead with the National Pain Awareness Campaign in September "Beautify in Blue"!!! Our Mayor signed the proclamation, and the man that I needed to speak with about signs, ribbons and so forth told me it was fine to go ahead and put those up for next month!! I am truly thrilled to be able to get "my home community" involved in this... even he said he suffers from migraines... so he totally gets chronic pain... I will keep you informed, make photos and post them etc as I get the stuff and get it up here in town... other than that, I HAVE TO GET WELL so I can have this back surgery... I will more than likely switch Medicare Plans for next year and that probably means I could lose my surgeon, so I have to get it done before the end of the year... all of that has been a nightmare also... to find out that my own HOSPITAL does NOT take the Medicare Advantage Plan, after I was told they did... but it is a huge ordeal and AARP should be ashamed of themselves for even sponsoring Untied Healthcare and what they have pulled on their clients... it is all over the internet how they have really messed so many of us up on our providers... I am still very concerned about Mom and all of the "memory" issues and things I've seen over the past several weeks... although I know from experience, lack of sleep, pain, new medications, stress can all be huge factors in our memories etc - it seems to be over and above all of that... anyway, I am playing catch up after being ill for so long and I am still not at my best (whatever that is anymore ) ;) just wanted to touch base with everyone and let you know I am still "alive" and not really "kicking" at the moment...
Friday, July 31, 2015
How to React to an "invisible bacteria" invading your body, when Autoimmune Diseases are involved & how do you know when you are "well"?
Good question! For myself, YES, it is! Whether it is a "missing" bone out of my spine, that was found after 55 years of life, or an unusual "lump" on the top of my let thigh, my entire "medical" life always evolves around being unusual, unique, complicated, complex, and some doctors almost "fear" having to treat me at times.
We all in the world now share an added sense of "something is worse now" than 20 years ago. Bacteria now that invades our bodies have mutated and changed so much, many of the well known medications to treat these bacterial infections no longer are able to do so. I found that over the years our bodies do have an extremely interesting way they fight certain things... like this lump on the top of my left thing. IT is my own immune system although compromised, that began getting that infection "rounded up" an circled to push it into this lump, in order to try and stop it from spreading more. So even with a body and immune system that tends to not work properly at times, I still have enough of my immunity, that the body tries its best to fend off the bacteria, thus the "lump" under my skin is cellulitis. But, unless you know about it, or it breaks to the outer skin, it can go possibly not noticed. Of course when the lump came up and began to grow so quickly I knew there was something very wrong.
things with myself and my Mom are just insane. Between my own needing for back surgery, and now to find out my Mom, who we thought has a hip problem, find out it is also her lumbar spine and arthritis. So, between running to doctors, to therapy, for tests, some local and some in Dallas, and then me to come down with the cellulitis, plus I have not even gotten the chest X-ray so I can go on Xeljanz. My "TB" blood test came back "inconclusive" but they feel it is because it did not get tested quickly enough, thus that happens. But, until I have the X-ray, my insurance will not approve the medication.
Of course the sweltering temperatures are not helping... we are under a heat warning for at least the next 5 days and more... looking at temps above 105 plus the heat indeces bringing it up to 110 and above at times...
Things are just a mess right now and I am about ready to throw in the towel, throw my hands up, and then hide under the bed for the next month or so... Gosh knows when it rains it pours... and my doctors all agree, I am a "complex and complicated" patient... YA THINK???
I apologize for not posting more here, but due to my health issues and then all of Mom's things, I have really not been able to sit here for very long to post... I decided I did need to come in and post a few things and share why I have been "lax" in my postings lately....
Here are a few links also I want to share with you...
http://blog.arthritis.org/stories-of-yes/miss-teen-minnesota-juvenile-arthritis/
http://www.lupusresearchinstitute.org/lupus-facts/fight-lupus/lupus-and-your-skin
http://www.lupus.org/general-news/entry/statement-on-the-results-of-epratuzumab-study-for-the-treatment-of-lupus
http://blog.arthritis.org/living-with-arthritis/omega-3-fatty-acids-arthritis/?utm_source=facebook
By the way, talking about "Fish oil" and such especially for your pets, dogs in particular, I had a friend tell me about her dog, who was very, very old and had severe issues with joints. She had put her on "Canna - Pet" which is "industrial hemp powder".... I tried it for Tazz a couple of months... and it just helped her immensely. I was so surprised and thrilled. BUT I was NOT thrilled with the PRICE! The stuff is like $30.00 for a month's supply. In fact, it would be 60.00 a month if you gave them 2 a day... anyway, I did my own research on this "hemp powder" and began to find that there are many "humans" that use it for all types of problems. Especially joint pain, and inflammation... even allergies and so forth. So, I looked on Amazon and found a bottle of "100% hemp powder".... and this has NO THC or whatever the initials are for what is in cannabis that humans use to smoke... it contains none of that... so there is no "high" anyone would get, and it would never show up in the bloodstream or urine. So, I ordered a fairly large canister full at about $10.00. Well, the price right there was much better, but I was not sure how well it would work... It works just as well if not better than those capsules, costs a heck of a lot less, and both dogs even like the taste of it. I can take a treat, or a piece of fresh fruit etc... and roll it in the powder and they just love the flavor. So, I've been giving it to them every morning, and then I put a bit on their food.... I can see both of them up playing, and doing things that before they just almost could not do, especially Tazzy.... I wanted to share this with all of you, and also the fish oil they love too. I feared they might eat their food, but they eat better with the fish oil on it.... LOL!!!! Anyway, a bit of information for some of you..
http://www.medpagetoday.com/Rheumatology/Lupus/52814
Lots of great news above... from information about Fish oil and its benefits, to a new Lupus medication on the horizon, Miss Teen who has made her dreams come true in spite of fighting Juvenile Arthritis, and more... I think you will like reading these...
http://www.ucb.com/presscenter/News/article/UCB-announces-Phase-3-clinical-trial-program-for-epratuzumab-in-Systemic-Lupus-Erythematosus-did-not-meet-primary-endpoint-nbsp
We all in the world now share an added sense of "something is worse now" than 20 years ago. Bacteria now that invades our bodies have mutated and changed so much, many of the well known medications to treat these bacterial infections no longer are able to do so. I found that over the years our bodies do have an extremely interesting way they fight certain things... like this lump on the top of my left thing. IT is my own immune system although compromised, that began getting that infection "rounded up" an circled to push it into this lump, in order to try and stop it from spreading more. So even with a body and immune system that tends to not work properly at times, I still have enough of my immunity, that the body tries its best to fend off the bacteria, thus the "lump" under my skin is cellulitis. But, unless you know about it, or it breaks to the outer skin, it can go possibly not noticed. Of course when the lump came up and began to grow so quickly I knew there was something very wrong.
things with myself and my Mom are just insane. Between my own needing for back surgery, and now to find out my Mom, who we thought has a hip problem, find out it is also her lumbar spine and arthritis. So, between running to doctors, to therapy, for tests, some local and some in Dallas, and then me to come down with the cellulitis, plus I have not even gotten the chest X-ray so I can go on Xeljanz. My "TB" blood test came back "inconclusive" but they feel it is because it did not get tested quickly enough, thus that happens. But, until I have the X-ray, my insurance will not approve the medication.
Of course the sweltering temperatures are not helping... we are under a heat warning for at least the next 5 days and more... looking at temps above 105 plus the heat indeces bringing it up to 110 and above at times...
Things are just a mess right now and I am about ready to throw in the towel, throw my hands up, and then hide under the bed for the next month or so... Gosh knows when it rains it pours... and my doctors all agree, I am a "complex and complicated" patient... YA THINK???
I apologize for not posting more here, but due to my health issues and then all of Mom's things, I have really not been able to sit here for very long to post... I decided I did need to come in and post a few things and share why I have been "lax" in my postings lately....
Here are a few links also I want to share with you...
http://blog.arthritis.org/stories-of-yes/miss-teen-minnesota-juvenile-arthritis/
http://www.lupusresearchinstitute.org/lupus-facts/fight-lupus/lupus-and-your-skin
http://www.lupus.org/general-news/entry/statement-on-the-results-of-epratuzumab-study-for-the-treatment-of-lupus
http://blog.arthritis.org/living-with-arthritis/omega-3-fatty-acids-arthritis/?utm_source=facebook
By the way, talking about "Fish oil" and such especially for your pets, dogs in particular, I had a friend tell me about her dog, who was very, very old and had severe issues with joints. She had put her on "Canna - Pet" which is "industrial hemp powder".... I tried it for Tazz a couple of months... and it just helped her immensely. I was so surprised and thrilled. BUT I was NOT thrilled with the PRICE! The stuff is like $30.00 for a month's supply. In fact, it would be 60.00 a month if you gave them 2 a day... anyway, I did my own research on this "hemp powder" and began to find that there are many "humans" that use it for all types of problems. Especially joint pain, and inflammation... even allergies and so forth. So, I looked on Amazon and found a bottle of "100% hemp powder".... and this has NO THC or whatever the initials are for what is in cannabis that humans use to smoke... it contains none of that... so there is no "high" anyone would get, and it would never show up in the bloodstream or urine. So, I ordered a fairly large canister full at about $10.00. Well, the price right there was much better, but I was not sure how well it would work... It works just as well if not better than those capsules, costs a heck of a lot less, and both dogs even like the taste of it. I can take a treat, or a piece of fresh fruit etc... and roll it in the powder and they just love the flavor. So, I've been giving it to them every morning, and then I put a bit on their food.... I can see both of them up playing, and doing things that before they just almost could not do, especially Tazzy.... I wanted to share this with all of you, and also the fish oil they love too. I feared they might eat their food, but they eat better with the fish oil on it.... LOL!!!! Anyway, a bit of information for some of you..
http://www.medpagetoday.com/Rheumatology/Lupus/52814
Lots of great news above... from information about Fish oil and its benefits, to a new Lupus medication on the horizon, Miss Teen who has made her dreams come true in spite of fighting Juvenile Arthritis, and more... I think you will like reading these...
http://www.ucb.com/presscenter/News/article/UCB-announces-Phase-3-clinical-trial-program-for-epratuzumab-in-Systemic-Lupus-Erythematosus-did-not-meet-primary-endpoint-nbsp
Friday, July 17, 2015
How MUCH MORE Can one person stand?! Chronic Illness, Dealing with Life's other issues, & not just losing your mind or collapsing in it all....
Honestly gals and guys... I am concerned that I am either getting "worse" when it comes to the RA,Lupus, and so forth... or I have something else really going on with me... I've just had all kinds of "new" symptoms... first of all, I am having moratl heck with my fingers, worse than ever before. My right hand has a couple of very swollen places between my middle finder and my "pointer" finger next to my thumb. Plus my thumbs are really bad again. Plus, I woke up in such severe pain in my lower back and down my legs this morning, I really thought I had a kidney stone again. It was almost like a "cramp" or what we used to refer to as a "stitch" in your side. But, rather than it kind of working itself out, it went on for a couple of hours, and even now it is not the best .... plus I have this worsening of the "weakness" type o feeling in my legs, almost like they are jello and feel as if they could just "collapse" when I am up walking. I've also had BOTH of my ankles again not so great, but my right one as always, is so swollen and hurts like I sprained it or something... and I still have that "odd" kind of pulling pain underneath my right arm and into my arm pit then kind of a bit around to my back.... my stomach is just a mess... as if I was having or trying to have "spastic" colon issues, but it has been 20 plus years since I had one of those attacks. I used to have them when I was younger and of course they always called it a "nervous stomach" back then. But, it is of course down into my lower intestines, like they are trying to cramp up... and then there is this almost too weird to try and explain, "severe" fog... brain fog, memory fog... and now it is just so bad... I walk around almost as if I am in a daze... and my memory is horrible the past couple of days... but I feel almost "detached" from myself... and I've had that happen a couple of times in the past 10 years or so... where you almost feel like even though "you are here"... you almost feel as if you are looking "down" upon what is going on... and really not "in" the situation,., I know there are terms for it... kind of one of those "fight or flight" responses, that our "mind" uses when we are way overly stressed... and when that "breaking point" begins to be felt... then we seem to "detach" from it all, and become a "quiet observer" because it is just ALL TOO MUCH to deal with... thus it is a mechanism to keep us from going completely bonkers... and my "LISTS of LISTS" keep getting longer and longer, yet I am further behind more every day.... It seems EVERYTHING right NOW is "priority",.. yet none of us can do 100 things all at once, and really "survive" going nuts....plus the night terrors have been so bad, this place of feeling so totally like a "failure", feeling like I don't "fit in", that people "dislike" me, and they look down on me, because I am not "enough"... Just about every night terror I have has this same theme... either I am "not good enough" for family, or some job, or some group of people I am around, or my "spouse".... hahahaha ..... now you see where I am coming from... I feel that now my life is HALF over or MORE THAN half over and I'VE NOT ACCOMPLISHED a damned thing I have wanted to... the list of things that my home needs is endless... now many of those that I would LOVE to be able to do... I know are not feasible for me to even give thought to....yet when I get so "bent" as I love Matchbox 20's song, "Bent" - I feel exactly that way "bent"... I have always thought no matter whether my family, a friend, someone I worked with, associated with... or anyone for that matter, that I am just "not enough", "not worthy",,, I've NOT done, this, that or the other... and that I SHOULD be accomplishing so much more... and the more I try to do, the more BEHIND I feel as if I am..... BUT TWO GREAT THINGS!!!!!! NUMBER1 - I GOT MOM'S INTO PT! And it is here in Ennis AND THEY TAKE THE INSURANCE!!! whew!!!! NUMBER 2 - She is scheduled to go see the pain doctor next Thursday so they can schedule the injections... SO HOOOORRRRAAAAAYYYY!!!!! THAT were two of the things I was most concerned about... so those are good to go.... NOW I MUST being to decide WHAT TO DO ABOUT MY LUMBAR/SACRAL spine fusion!!! I "THOUGHT" I MAYBE able to put if off for a while... but, as badly as the pain has been even worse than before the test was done... I don't think putting it off is an option, well not for long... I think just as my pain doctor said, get it fixed NOW... for it will only get so much worse, and I do not want to wait until I am even worse... then my recovery time OR even (and this may happen anyway) I think when he does surgery, it will be a HUGE worse MESS than any test showed... it never fails for me... it always is like that.... anyway.... I am still knee deep in stuff to do... but it am just totally wiped.... more to come...
Tuesday, July 7, 2015
The Petechia is back and rashes ... still don't have a clue... Rashes, Brusing, Petechia, lowe back issues, hips issues, does it EVER END with AI Illnesses??????
Tuesday, June 30, 2015
When "Radiology Reports" come in and say you had a "prior" laminectomy BUT you NEVER had LUMBAR Surgery~ - Really???
I have a VERY ODD Question for everyone.... Have you ever heard of
someone having a test done on their lumbar spine, for instance as I did
last Friday, AN when the Radiologist read and typed his his report, he
says several times there appears to be "such and such" from a "PREVIOUS"
laminectomy????? I have NEVER HAD LUMBAR spine surgery... NONE! So, was
he SEEING something that could be "further damage" I have, that for
some reason made him think I have had a laminectomy before?
I've tried to think of a way to "google" the question, and just can't
get it worded where I can find out why this might be. So, if anyone has
ever heard of this. or knows anything about it, feel free to post. I GOT
my reports from the discogram done on Friday. My Orthopedic surgeon has
NOT gotten back to me, but the reports were already up on my personal
"patient portal" this morning. So, I could sign in, see and print them.
So, I already know what the tests say, but this business about him
saying something several times about a "prior" laminectomy has thrown me
for a loop.... ( can also be spelled laminotomy) and can mean "partially removed" or "fully removed" depending on which was done... YET NEVER HAD I HAD THIS DONE???
More later.... but if anyone has an answer... or how to look this up so I can get an answer... feel free to post, post on my Facebook page, or send me an email... I am so curious as to "why" it "appears" I've had an operation on my "lumbar spine" when I never have....
I went ALL WEEK LONG, well since Monday KNOWING that my Orthopedic surgeon HAD the "discogram" results. I had "pulled" them myself on Monday afternoon, from my "patient portal" and printed both the discogram and the CT afterwards so I could read more about them.
FINALLY yesterday REALLY??? I get a call from his office! (About time Huh)? So, of course he wants to "go over" the results with me... I can fairly well guess what that will entail. If what I am reading is how I interpret it, I am sure I will be going through at least a "1 LEVEL" "fix" between my L-5 and S-1 discs... so that maybe actually "2" not sure how they were looking at it.
Well, so happens Mom has an her appointment with Him next week also! So, I asked if there was anyway, they could fit me in either before or after her.... well some times things actually DO work out! Unless something changes he can see me right after seeing my Mom, on that same afternoon..... YES!!!!!!!! What a thrill... not of course getting to the results, for either of us, but at least NOT MAKING 2 TRIPS to thSAME DOCTOR in DALLAS in the same week!
I am still quite in a quandry about this "prior" lamenectomy thing. My suspicions are either since I had the CT back in early May, I believe, due to the osteoporosis, "something broke off" thus creating it to appear I had a "prior" removal of that part in my lumbar spine.... either than or the guy is a total nut!! Which also could be true!!! I'll keep you posted here and on FB... I appreciate as always the kindness I receive from so many of you.....
Fingers crossed that IF I DO have to have SURGERY, it will be more of a "micro" thing, without a huge ordeal of very invasive operating.... but time will tell......
More later.... but if anyone has an answer... or how to look this up so I can get an answer... feel free to post, post on my Facebook page, or send me an email... I am so curious as to "why" it "appears" I've had an operation on my "lumbar spine" when I never have....
I went ALL WEEK LONG, well since Monday KNOWING that my Orthopedic surgeon HAD the "discogram" results. I had "pulled" them myself on Monday afternoon, from my "patient portal" and printed both the discogram and the CT afterwards so I could read more about them.
FINALLY yesterday REALLY??? I get a call from his office! (About time Huh)? So, of course he wants to "go over" the results with me... I can fairly well guess what that will entail. If what I am reading is how I interpret it, I am sure I will be going through at least a "1 LEVEL" "fix" between my L-5 and S-1 discs... so that maybe actually "2" not sure how they were looking at it.
Well, so happens Mom has an her appointment with Him next week also! So, I asked if there was anyway, they could fit me in either before or after her.... well some times things actually DO work out! Unless something changes he can see me right after seeing my Mom, on that same afternoon..... YES!!!!!!!! What a thrill... not of course getting to the results, for either of us, but at least NOT MAKING 2 TRIPS to thSAME DOCTOR in DALLAS in the same week!
I am still quite in a quandry about this "prior" lamenectomy thing. My suspicions are either since I had the CT back in early May, I believe, due to the osteoporosis, "something broke off" thus creating it to appear I had a "prior" removal of that part in my lumbar spine.... either than or the guy is a total nut!! Which also could be true!!! I'll keep you posted here and on FB... I appreciate as always the kindness I receive from so many of you.....
Fingers crossed that IF I DO have to have SURGERY, it will be more of a "micro" thing, without a huge ordeal of very invasive operating.... but time will tell......
Monday, June 15, 2015
I am here still with the Flares, and more... Lupus. RA, Xeljanz, insurance, and Chronic Illnesses and Pain
I 've added 3 photo's of what the side on my right knee looks like now.
I thought I should post, so everyone would not think I had up and disappeared! LOL!!! I would imagine "some" people could care less if I disappeared forever and to eternity! ;) But, that is another very LONG story for another TIME when I feel I can "blog" a bit more as far as my own situation goes. For now, first of all, I am thrilled to be helping WEGO on several projects. I also am of course continuing my Platinum Ambassador activism. I also of course also post, blog, and so on about other chronic illnesses, and chronic pain. My pain level has been out the roof! Yet, I realize that others are either as bad as I am, OR possibly worse. I have been just as busy as a bee with things here at home. From taking down old desks, cleaning closets and dresser drawers, sanding on the inside windows in the spare room... to getting rid of LOADS of things that either have not been used in eons, never will be, are probably to old to use, and things that are generally worn out. I HATE a home full of "stuff" that is just that, stuff. So, I am pairing down a great deal of everything in each and every nook and cranny of this house. I am also in the process of finding my Mom an Orthopedic doctor. She has got to have her hip seen about. It is to the point that even Mobic, and it is a strong NSAID is not helping her. She is "still limping that leg and hip. So, it is more than time to have it X-rayed and get a specialist to either give her an injection into that hip, or something needs to be done. Of course my own issues with my hips, both, and lower back are also nuts. I had to POSTPONE the discograph again due to these flares and the "immune" situation for now, especially with prednisone... thus I am GOING to have that done a week from today on the 22nd... and I hope this time I can get there, and get it over with. I am ready (well no one is ever ready) to discuss "what" needs to be done, not done, and how to deal with the ordeal. I have to get a huge amount of blood work done, especially the "TB Gold" test, before my insurance will think about covering Xeljanz. So, I will go in later in the week to get that done. Then if the insurance will okay it, I will be trying the Xeljanz for the RA etc. I know I had a couple other things to "say" but now I cannot remember them... alas brain fog... ;)
I thought I should post, so everyone would not think I had up and disappeared! LOL!!! I would imagine "some" people could care less if I disappeared forever and to eternity! ;) But, that is another very LONG story for another TIME when I feel I can "blog" a bit more as far as my own situation goes. For now, first of all, I am thrilled to be helping WEGO on several projects. I also am of course continuing my Platinum Ambassador activism. I also of course also post, blog, and so on about other chronic illnesses, and chronic pain. My pain level has been out the roof! Yet, I realize that others are either as bad as I am, OR possibly worse. I have been just as busy as a bee with things here at home. From taking down old desks, cleaning closets and dresser drawers, sanding on the inside windows in the spare room... to getting rid of LOADS of things that either have not been used in eons, never will be, are probably to old to use, and things that are generally worn out. I HATE a home full of "stuff" that is just that, stuff. So, I am pairing down a great deal of everything in each and every nook and cranny of this house. I am also in the process of finding my Mom an Orthopedic doctor. She has got to have her hip seen about. It is to the point that even Mobic, and it is a strong NSAID is not helping her. She is "still limping that leg and hip. So, it is more than time to have it X-rayed and get a specialist to either give her an injection into that hip, or something needs to be done. Of course my own issues with my hips, both, and lower back are also nuts. I had to POSTPONE the discograph again due to these flares and the "immune" situation for now, especially with prednisone... thus I am GOING to have that done a week from today on the 22nd... and I hope this time I can get there, and get it over with. I am ready (well no one is ever ready) to discuss "what" needs to be done, not done, and how to deal with the ordeal. I have to get a huge amount of blood work done, especially the "TB Gold" test, before my insurance will think about covering Xeljanz. So, I will go in later in the week to get that done. Then if the insurance will okay it, I will be trying the Xeljanz for the RA etc. I know I had a couple other things to "say" but now I cannot remember them... alas brain fog... ;)
Friday, May 8, 2015
I continue this ongoing saga of Lumbar spine issues, bad weather that I am SICK OF, am Happy to see more people coming to my blog, and things about Autoimmune and Arthritic Illnesses
Well, here I am again... another weekend that "appears" to look like all hell is going to break loose. Which again is really irking the crap out of me, because I do not want to have to POSTPONE yet another trip to the Casino!!!
I've already been through this a couple of times, last weekend, it was supposed to be "earth shattering" weather and it did NOTHING.
Now here it is Mother's Day, and again the forecast (extended) is showing rain, rain, rain, storms, floods, and more crappy weather.
Actually, I went, got out my brand new white jeans that I've been wanting to wear, and they still have the tags on them. I also have a beautiful top that just looks awesome with them, plus add in my rhinestone studded sandals, a bit of makeup, a necklace and earrings, and I am set to go to Winstar!!!
Well, I call my Mom, and she has not even "given it much thought" of us going. Yada, yada, yada... about how bad the weather is supposed to be Sunday, and thinking we should postpone... well now we are looking at much later in the month, when I had doctors appointments in Dallas - two of them back to back on the 20th and 21t! Neither of which I can miss at all. One is to have my pain pump refilled, the other is my very LONG AWAITED getting to see my Rheumatologist again. It has been months and month, and months since I saw him. In fact due to something, in fact, I believe I had double pneumonia and was supposed to see him. I had to reschedule and the other appointment was like in December of 2014!!! So, it has taken me patiently waiting now for 6 MONTHS just to get into see him. I can see his PA of course much sooner, but seeing him, especially since we are possibly thinking of a medication change... I MUST NOT miss this appt!
I am NOT happy about this "discograph" business. From all I've read it is NOT a "comfortable" type of test. It is also much more invasive than having epidural steroid injections. So, that raises the risk of a spine fluid leak, or infection more than the injections. I see that depending on the scan and how far it needs to go, it can be anywhere from an hour to 2 or 3 hours, depending on what all the doctor orders. I know Medical City Hospital in an Excellent place. So, that in itself does not bother me. But, anytime now when you have a "compromised" immune system, whether autoimmune related, or whatever the case may be, you really are trying to "avoid" anything that could have the potential of causing infection, especially into the spinal fluid, blood and so on.
When you are sick, the hospital is the very place you want to avoid usually. Because the others around you maybe having many more types of illnesses that could potentially cause a worse infection.
I've not really had many issues, as far as surgery goes. I usually do well under anesthetic. As far as a surgery, I have not had any massive complications. Yet, when you combine the AAI, the prednisone, the Orencia, and other meds I must take, then there is the rise in whether an infection could happen, rather than someone who does not have immune issues, or is not on medications that could cause you problems later.
I also know this is going to be one of those types of tests that no matter what I already have had done in the past 6 weeks, which was the CT Scan and then the epidural steroid injections into the Transforminal space around those vertebra, that shows that is the place of issue, this doctor STILL is going to insist that I have this other stupid test done.
Of course yes, I could "find" another surgeon. Well, that could lead to the exact same situation, and also could lead into me not having the "best of the best" as far as my Orthopedic surgeon go. He is the one that truly remedied my shoulder pain and my neck pain. Without him, I honestly don't think I would have made it.
To me, he is the "gold standard" in surgeons for these types of problems. Although once again his bedside manner is about like a jackass, and he is an argumenative, and thinks he knows absolutely everything, and patients as far as he is considered need to "follow his rules" and NOT try and tell him anything you may know.
So, it is trying to decide what is worse to deal with when it comes to having him as an Orthopedic Surgeon.
I've got to go to get dressed and run to "Wally world". I need a belt to go with some white jeans I would like to wear, thus there is about the only place here to look. Then I have to run Jim over to the Clinic in Waxahachie about some of his meds.
More to come.....
I've already been through this a couple of times, last weekend, it was supposed to be "earth shattering" weather and it did NOTHING.
Now here it is Mother's Day, and again the forecast (extended) is showing rain, rain, rain, storms, floods, and more crappy weather.
Actually, I went, got out my brand new white jeans that I've been wanting to wear, and they still have the tags on them. I also have a beautiful top that just looks awesome with them, plus add in my rhinestone studded sandals, a bit of makeup, a necklace and earrings, and I am set to go to Winstar!!!
Well, I call my Mom, and she has not even "given it much thought" of us going. Yada, yada, yada... about how bad the weather is supposed to be Sunday, and thinking we should postpone... well now we are looking at much later in the month, when I had doctors appointments in Dallas - two of them back to back on the 20th and 21t! Neither of which I can miss at all. One is to have my pain pump refilled, the other is my very LONG AWAITED getting to see my Rheumatologist again. It has been months and month, and months since I saw him. In fact due to something, in fact, I believe I had double pneumonia and was supposed to see him. I had to reschedule and the other appointment was like in December of 2014!!! So, it has taken me patiently waiting now for 6 MONTHS just to get into see him. I can see his PA of course much sooner, but seeing him, especially since we are possibly thinking of a medication change... I MUST NOT miss this appt!
I am NOT happy about this "discograph" business. From all I've read it is NOT a "comfortable" type of test. It is also much more invasive than having epidural steroid injections. So, that raises the risk of a spine fluid leak, or infection more than the injections. I see that depending on the scan and how far it needs to go, it can be anywhere from an hour to 2 or 3 hours, depending on what all the doctor orders. I know Medical City Hospital in an Excellent place. So, that in itself does not bother me. But, anytime now when you have a "compromised" immune system, whether autoimmune related, or whatever the case may be, you really are trying to "avoid" anything that could have the potential of causing infection, especially into the spinal fluid, blood and so on.
When you are sick, the hospital is the very place you want to avoid usually. Because the others around you maybe having many more types of illnesses that could potentially cause a worse infection.
I've not really had many issues, as far as surgery goes. I usually do well under anesthetic. As far as a surgery, I have not had any massive complications. Yet, when you combine the AAI, the prednisone, the Orencia, and other meds I must take, then there is the rise in whether an infection could happen, rather than someone who does not have immune issues, or is not on medications that could cause you problems later.
I also know this is going to be one of those types of tests that no matter what I already have had done in the past 6 weeks, which was the CT Scan and then the epidural steroid injections into the Transforminal space around those vertebra, that shows that is the place of issue, this doctor STILL is going to insist that I have this other stupid test done.
Of course yes, I could "find" another surgeon. Well, that could lead to the exact same situation, and also could lead into me not having the "best of the best" as far as my Orthopedic surgeon go. He is the one that truly remedied my shoulder pain and my neck pain. Without him, I honestly don't think I would have made it.
To me, he is the "gold standard" in surgeons for these types of problems. Although once again his bedside manner is about like a jackass, and he is an argumenative, and thinks he knows absolutely everything, and patients as far as he is considered need to "follow his rules" and NOT try and tell him anything you may know.
So, it is trying to decide what is worse to deal with when it comes to having him as an Orthopedic Surgeon.
I've got to go to get dressed and run to "Wally world". I need a belt to go with some white jeans I would like to wear, thus there is about the only place here to look. Then I have to run Jim over to the Clinic in Waxahachie about some of his meds.
More to come.....
Thursday, May 7, 2015
What do you do when you just don't know what to do? Discograph, CT Scan, and just FED UP!
I've just about had my fill of physicians, medications, tests, evaluations, scans, and everything else that falls within and in between the realms of "chronic illness and chronic pain"....
It is like no matter how hard you try to do ALL you can to make things run smoothly, you can bet someone will be either rude, hateful, or other words I guess I won't say here in this post, but it rhymes with "witch"...
I've been on the phone with the different doctors offices this morning, TRYING to make their job a bit easier. Both times, and it was both the doctors main nurses, that decided rather than be "nice" they were going to be jackasses.
The first one, has always been a jerk. I don't even know why she continues to be a "nurse". Her personality along with this particular doctor's as about as kind as a brick. You feel like you are little kid being punished over something you didn't even do. I tried to ask her question, as she began rattling off to me what "the doctor said"... and rather than her give me a moment to ask if he "has all of the records" from my pain doctor that did the injections, and did a follow up, she told me, it matters not, and I don't have "time" to dig through your chart to look! What an ass! Well, if those records are NOT there, then it could be that the doctor does NOT have the whole picture. In the first place, my pain specialist, who has known me now since about 2008-09, I TRUST! When he told me last week a "discogram" was redundant and not really necessary since the injections helped for a few days... that if surgery is needed, then get it done, and don't wait. He is usually "conservative" but his main issue is that he fear with the insurance I have, if I put it off and it gets worse, my insurance may "buck up" and give me hell having it. Thus he said before I have worse problems, worse pain, that he recommended to go ahead and have it. It is just one "level" for now, which should not be nearly as "less likely" to do well, than if I were either older, or something else happens like I get a compression fracture from the osteoporosis. In fact, he said that I could already have one or more but, things could get worse. As usual, each time I've had a joint surgery, when they actually get into the joint to see, it is a freaking mess. I've been told that with EVERY joint replacement I've had. Every time it seems it is much worse than what any scan, MRI. X-ray etc every shows. Last time all of the "damage" was deeper into the joints, thus no scan would have ever shown it. They had to go by symptoms, amount of pain, and kind of figure from everything I could tell them what was going on. And each time I've been right. It is always worse than it was on a scan.
So, to now want to put me through yet another, much more invasive "scan" or discogram, he should be aware of me also... that I am not the "usual" patient. There always has to be something "different" with me... I am always the complicated, never know until you know what is going on.
So, now today (May 7th, 2015, I get a call to "schedule" the discograph, gram - whatever they call it, which is by more than one name... and they tell me I can have it done anytime, just tell them when. Well, this week is totally out of the question. I will again have to see if my son can take me. This will be done at Medical City in Dallas, at one of the "specialty" radiology places there. So, as I look at the calendar, and of course I am hurting today bad enough to scream, but this weekend is Mother's Day and if the WEATHER will act right, Mom and I are going to the Casino... but of course the weather is showing to be not so great Sunday and Monday, so once again, I maybe cancelling the trip. Plus here it is Thursday and I have not even began to get ready. I don't have anything thought out to wear, both my nails and toe nails need to be painted, and I need to decide what to pack and so on, and so forth. The weeks tend to go by much too quickly. It is Monday, and before I blink it's Thursday!!!
So, next week it out. Plus that is really not enough time to give my son a chance to work it into his schedule. So, the followng week I already have 2 doctrs appointments in Dallas. My Rheumatologist on Wednesday and then my pain pump refilled on the Thursday of that week... so they already have me plenty booked for that week. Thus that leaves the last weekend of the month. Which again seems like forever when you are hurting, and after I hung up I said Damned maybe I should have scheduled it for next week... but again I have to have someone to drive me home... so I have to give him time to schedule that in also.
It sucks now, because there is no way, no how, Jim nor Mom can drive... and Mom not at all in Dallas, hell it is already bad enough in Ennis....
So, now I have this thing scheduled for May 27th at 7:00 AM and they will do this at 8:00 AM. I've got to look some things up. No one mentioned insurance and so forth. So my though is she was the "nurse" who schedules everything, and someone else from the business office will be hitting me up for insurance and money.
I hope to Christ it is about what the injections were, which still is NOT cheap.
Yet after the article I read about Spondyliti, now I am wondering if this should be an issue I take up with my Rheumatologist anyway before I start having an invasive test. It could be that there is damage there and the tests don't see it, as usual on me, OR if I do have this, then it maybe 7 to 10 years before the evidence shows on any type of scan... here is the URL to the article:
http://www.rheumatologynetwork.com/acr-2014/long-awaited-spondylitis-guidelines-previewed-acr-meeting
Which if that is the case, then this could be something that a medication change or something may help rather than going on with a test that could lead to very lower lumbar/sacra; (L-5/S-1) surgery. As I say, say and say again I REALLY DO NOT WANT TO FACE LOWER BACK SURGERY!!! It totally frightens the hell out of me. I've heard TOO MANY "failed" back lower surgeries, that either put people in worse pain, in wheelchairs, or lead to other back surgeries to fix the first one.
Of course I did also say that about "cervical neck surgery" also. Yet, when it came to knowing I would have "RELIEF" from the horrid shoulder blade pain I was in, I was ready for anything to take it away... thus as soon as I came out of the surgery, the pain was basically gone... so there are times that any kind of "back surgery" that can give a pretty good rating of helping to reduce pain and give back motion is something to consider, but also consider very seriously about all things involved... so I cannot say NO, I WON'T .... because if that is what it takes to rid me of this pain, where I can move forward with my life, and writing my book, then I may not have any other choice but to go along with it.
I will post some information about the procedure in a bit. Again, I am hurting having to sit and type... so it's time to get up and move around for awhile....
http://www.rheumatologynetwork.com/acr-2014/long-awaited-spondylitis-guidelines-previewed-acr-meeting
It is like no matter how hard you try to do ALL you can to make things run smoothly, you can bet someone will be either rude, hateful, or other words I guess I won't say here in this post, but it rhymes with "witch"...
I've been on the phone with the different doctors offices this morning, TRYING to make their job a bit easier. Both times, and it was both the doctors main nurses, that decided rather than be "nice" they were going to be jackasses.
The first one, has always been a jerk. I don't even know why she continues to be a "nurse". Her personality along with this particular doctor's as about as kind as a brick. You feel like you are little kid being punished over something you didn't even do. I tried to ask her question, as she began rattling off to me what "the doctor said"... and rather than her give me a moment to ask if he "has all of the records" from my pain doctor that did the injections, and did a follow up, she told me, it matters not, and I don't have "time" to dig through your chart to look! What an ass! Well, if those records are NOT there, then it could be that the doctor does NOT have the whole picture. In the first place, my pain specialist, who has known me now since about 2008-09, I TRUST! When he told me last week a "discogram" was redundant and not really necessary since the injections helped for a few days... that if surgery is needed, then get it done, and don't wait. He is usually "conservative" but his main issue is that he fear with the insurance I have, if I put it off and it gets worse, my insurance may "buck up" and give me hell having it. Thus he said before I have worse problems, worse pain, that he recommended to go ahead and have it. It is just one "level" for now, which should not be nearly as "less likely" to do well, than if I were either older, or something else happens like I get a compression fracture from the osteoporosis. In fact, he said that I could already have one or more but, things could get worse. As usual, each time I've had a joint surgery, when they actually get into the joint to see, it is a freaking mess. I've been told that with EVERY joint replacement I've had. Every time it seems it is much worse than what any scan, MRI. X-ray etc every shows. Last time all of the "damage" was deeper into the joints, thus no scan would have ever shown it. They had to go by symptoms, amount of pain, and kind of figure from everything I could tell them what was going on. And each time I've been right. It is always worse than it was on a scan.
So, to now want to put me through yet another, much more invasive "scan" or discogram, he should be aware of me also... that I am not the "usual" patient. There always has to be something "different" with me... I am always the complicated, never know until you know what is going on.
So, now today (May 7th, 2015, I get a call to "schedule" the discograph, gram - whatever they call it, which is by more than one name... and they tell me I can have it done anytime, just tell them when. Well, this week is totally out of the question. I will again have to see if my son can take me. This will be done at Medical City in Dallas, at one of the "specialty" radiology places there. So, as I look at the calendar, and of course I am hurting today bad enough to scream, but this weekend is Mother's Day and if the WEATHER will act right, Mom and I are going to the Casino... but of course the weather is showing to be not so great Sunday and Monday, so once again, I maybe cancelling the trip. Plus here it is Thursday and I have not even began to get ready. I don't have anything thought out to wear, both my nails and toe nails need to be painted, and I need to decide what to pack and so on, and so forth. The weeks tend to go by much too quickly. It is Monday, and before I blink it's Thursday!!!
So, next week it out. Plus that is really not enough time to give my son a chance to work it into his schedule. So, the followng week I already have 2 doctrs appointments in Dallas. My Rheumatologist on Wednesday and then my pain pump refilled on the Thursday of that week... so they already have me plenty booked for that week. Thus that leaves the last weekend of the month. Which again seems like forever when you are hurting, and after I hung up I said Damned maybe I should have scheduled it for next week... but again I have to have someone to drive me home... so I have to give him time to schedule that in also.
It sucks now, because there is no way, no how, Jim nor Mom can drive... and Mom not at all in Dallas, hell it is already bad enough in Ennis....
So, now I have this thing scheduled for May 27th at 7:00 AM and they will do this at 8:00 AM. I've got to look some things up. No one mentioned insurance and so forth. So my though is she was the "nurse" who schedules everything, and someone else from the business office will be hitting me up for insurance and money.
I hope to Christ it is about what the injections were, which still is NOT cheap.
Yet after the article I read about Spondyliti, now I am wondering if this should be an issue I take up with my Rheumatologist anyway before I start having an invasive test. It could be that there is damage there and the tests don't see it, as usual on me, OR if I do have this, then it maybe 7 to 10 years before the evidence shows on any type of scan... here is the URL to the article:
http://www.rheumatologynetwork.com/acr-2014/long-awaited-spondylitis-guidelines-previewed-acr-meeting
Which if that is the case, then this could be something that a medication change or something may help rather than going on with a test that could lead to very lower lumbar/sacra; (L-5/S-1) surgery. As I say, say and say again I REALLY DO NOT WANT TO FACE LOWER BACK SURGERY!!! It totally frightens the hell out of me. I've heard TOO MANY "failed" back lower surgeries, that either put people in worse pain, in wheelchairs, or lead to other back surgeries to fix the first one.
Of course I did also say that about "cervical neck surgery" also. Yet, when it came to knowing I would have "RELIEF" from the horrid shoulder blade pain I was in, I was ready for anything to take it away... thus as soon as I came out of the surgery, the pain was basically gone... so there are times that any kind of "back surgery" that can give a pretty good rating of helping to reduce pain and give back motion is something to consider, but also consider very seriously about all things involved... so I cannot say NO, I WON'T .... because if that is what it takes to rid me of this pain, where I can move forward with my life, and writing my book, then I may not have any other choice but to go along with it.
I will post some information about the procedure in a bit. Again, I am hurting having to sit and type... so it's time to get up and move around for awhile....
http://www.rheumatologynetwork.com/acr-2014/long-awaited-spondylitis-guidelines-previewed-acr-meeting
Friday, April 24, 2015
When the Physicians Allow You to Hurt Like Hell - and play this "hurry up and wait" Ordeal - Intractable Pain....
I did not finish this BEFORE leaving the page yesterday, so everything I wrote after this initial post was lost. I had asked if anyone had one of these "discograms".... and if so was it as bad as what I am reading? It just seems like this is not a test to take lightly. Plus you may end up in worse pain than you already are. I went to my Orthopedic surgeon this week. He was the one that actually put my new right shoulder in and then done my 4 level neck surgery about two years ago. As awesome of a SURGEON AND DOCTOR as he is, he "patient repoire" SUCKS!! He "hates" an educated patient. I had written before that him and I have gotten into it, before he did my neck surgery. I had given him my own thoughts after doing a great deal of research, even on the "reverse shoulder replacement" and he just didn't appreciate "me" a layman, even attempting to let him know my thoughts on the situation. He basically told me I was "stupid".... and later on, after the surgeries were done and MOST OF WHAT I SAID, was TRUE about my situation, he had in his own weird way had to 'APOLOGIZE" for making it sound like I was stupid. I never got a total I am sorry, or apology, but in his own way, he kind of smoothed everything over. Anyway now I've found more information on "sacroiliitis.... that sounds also more like what is going on with me and my very lower back, almost at my tailbone, and then into both hips and traveling at times down to my knees.... I just did some research on it, after a doctor in CA had "tweeted" me about what I posted about my lower back and hip pain... I found out this issue often is looked over, and the doctors "miss" that this is the issue, and blame it on a lumbar spine thing instead. Well, as I've told both doctors now, I feel I have two issues.... maybe my very lowest lumbar vertebra and my S-1 -S-2 have issues.... BUT there is something going on with my hips themselves, or another issue causing the severe hip pain. He had the audacity to tell me that the severe pain I was having in my hips, no way could be caused by bursitis... or the like... which is bull... I KNOW I've had hip bursitis several times and it hurts like hell!!! Now here I sit, in fact I just tried the very "test" this doctor said to try in order to see if this is possibly this sacroiliitis or not. And both sides put me almost in a scream to try and "test" to see if that is the cause. So, now here I am NOT gotten any relief and in fact, I am WORSE TODAY!!! And I don't see my pain doctor until next Thursday. I am in tears with severe pain. It matters not if I sit, stand, walk... right now the sitting is the worst. But, if I go out and walk a bit, then it also hits me like a razor sharp ball of fire into my very low buttocks, and hips, then down the sides of both legs.... I cannot take much more of this crap.... I am almost to the place of intractable pain again..... Why is it, no matter how badly we hurt, it is always this "hurry up and wait" game with physicians????
I've done enough research through out all of my chronic illness and pain issues now for so many years, I could almost be a doctor myself... or a pretty good researcher....
Yet, this is beginning to be the end of how much I can take. I realize ANY of us are in all types of pain. Often we are in such an overload of it, we would do just about any and everything to stop it.
What do you do? We know that going to an ER with "chronic pain' is just about like peeing out of the back of a moving truck bed. We know that most of our physicians, want to do a billion dollars worth of tests, scans, injections, treatments, and all or none may work or not work. I have said over and over again, that no matter where they have ever done "CT Scans", or MRi's, EMG's, EEG's.... all types of nerve tests... blood work. and yes there is some thing that show up. Yet, only when a surgeon FINALLY GOES IN - that is when they see JUST HOW BADLY MY JOINTS ARE SCREWED UP!
I've been told that by several of my physicians over the years. So, again, I will repeat, since it is worth repeating, TESTS DO NOT ALWAYS mean they are TRUE AND CORRECT! Tests are usually as good as the person doing them, and then whomever does the reading of them...
A very good example just happened to me this week. I had a CT can about 4 weeks ago, on my lumbar spine. It did show some problems in my lumbar spine, and although not just HUGE issues, my pain doctor said it could be enough to cause the pain I am having.
I go to my Orthopedic Surgeon this week. He was "supposed" to have a copy of the CT Scan. Somehow, between me going into that building, and seeing him in his office, my CT Scan results suddenly disappeared. I KNOW it was there with the paperwork I brought in. I saw it, and I said it twice or three times... his office somewhere lost it, put it in another chart or something. BUT, He did DO regular X-Rays on my lower lumbar spine and hips. He could tell me MORE by regular X-rays about my lumbar spine, and so forth THAN THE CT SCAN EVEN WAS SHOWING... and He had NOT even seen the scan. So, that just goes to show, with a simple couple of X-rays, a physician that KNOWS what he is looking for, can sometimes find something before ordering other very expensive, more invasive tests! I thought he had been reading the CT Scan. Then he mentioned about possibly having one done. I said well I just had one 4 weeks ago and I brought it in with the rest of that paperwork. Of course NO he had not seen it, but it did see the problems. He began to tell me that due to the extreme amount of pain I was in, there was no way that my hips could cause the pain. I say BULL! When I was this bad before, my hips were injected into the bursa with corticosteroid and it worked, two times at least.
Anyway, it went on to prove to me, in all honesty, when a proper physician sees some tests such as this plain X-Ray.... they can go by that and what the patient says, rather than order $1,000.00's of dollars worth of tests, that if not read correctly would not show how bad it really was.
So, I have tried just about any and everything to "keep my mind" off the pain... between baking, writing, doing emails, reading and so on... nothing is helping. Here it is Friday afternoon, and I have another week to put up with this mess.....
I've done enough research through out all of my chronic illness and pain issues now for so many years, I could almost be a doctor myself... or a pretty good researcher....
Yet, this is beginning to be the end of how much I can take. I realize ANY of us are in all types of pain. Often we are in such an overload of it, we would do just about any and everything to stop it.
What do you do? We know that going to an ER with "chronic pain' is just about like peeing out of the back of a moving truck bed. We know that most of our physicians, want to do a billion dollars worth of tests, scans, injections, treatments, and all or none may work or not work. I have said over and over again, that no matter where they have ever done "CT Scans", or MRi's, EMG's, EEG's.... all types of nerve tests... blood work. and yes there is some thing that show up. Yet, only when a surgeon FINALLY GOES IN - that is when they see JUST HOW BADLY MY JOINTS ARE SCREWED UP!
I've been told that by several of my physicians over the years. So, again, I will repeat, since it is worth repeating, TESTS DO NOT ALWAYS mean they are TRUE AND CORRECT! Tests are usually as good as the person doing them, and then whomever does the reading of them...
A very good example just happened to me this week. I had a CT can about 4 weeks ago, on my lumbar spine. It did show some problems in my lumbar spine, and although not just HUGE issues, my pain doctor said it could be enough to cause the pain I am having.
I go to my Orthopedic Surgeon this week. He was "supposed" to have a copy of the CT Scan. Somehow, between me going into that building, and seeing him in his office, my CT Scan results suddenly disappeared. I KNOW it was there with the paperwork I brought in. I saw it, and I said it twice or three times... his office somewhere lost it, put it in another chart or something. BUT, He did DO regular X-Rays on my lower lumbar spine and hips. He could tell me MORE by regular X-rays about my lumbar spine, and so forth THAN THE CT SCAN EVEN WAS SHOWING... and He had NOT even seen the scan. So, that just goes to show, with a simple couple of X-rays, a physician that KNOWS what he is looking for, can sometimes find something before ordering other very expensive, more invasive tests! I thought he had been reading the CT Scan. Then he mentioned about possibly having one done. I said well I just had one 4 weeks ago and I brought it in with the rest of that paperwork. Of course NO he had not seen it, but it did see the problems. He began to tell me that due to the extreme amount of pain I was in, there was no way that my hips could cause the pain. I say BULL! When I was this bad before, my hips were injected into the bursa with corticosteroid and it worked, two times at least.
Anyway, it went on to prove to me, in all honesty, when a proper physician sees some tests such as this plain X-Ray.... they can go by that and what the patient says, rather than order $1,000.00's of dollars worth of tests, that if not read correctly would not show how bad it really was.
So, I have tried just about any and everything to "keep my mind" off the pain... between baking, writing, doing emails, reading and so on... nothing is helping. Here it is Friday afternoon, and I have another week to put up with this mess.....
Could I scream????!!!!! YOU BET I COULD!!!!!!!!!
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