I can't really go into lots of details at the moment, but there are some really life changing things going on at this time for myself, and my family.
When you are chronically ill, and or in chronic pain... at the first you may never have the thought about HOW MUCH your life can change. Then as the doctors visits, medications, tests, surgeries, fatigue.... and so many things change, physically, emotionally, mentally... all aspects of what used to be "normal"... can be gone within a breath's space...
Then you have two people, one that has been "healthier" that could stand in for the other, when illness or flares hit... and all of a sudden that person is also either as ill as you, or even worse. So, that is when nothing is the same... you may think things will improve, we will find a "new normal".... and it just takes time, patience, tenacity... will power, respect, and love to finally find whatever can go on in the future. Yet, a "dam" appears... the river of life that you felt was so awesome, suddenly turns into a raging force, driving one in one direction, a fork you may say, and the other, suddenly winds up in the opposite direction.... and that is when "trying to piece back your life" can either be not really going to happen, might happen, or usually you finally KNOW, things must change... and change drastically, for both of your sakes...
As I said, I can't go into lots of details, and for now, I think those that do know me, and have an understanding of all of the drama, the illnesses, surgeries, doctors, and pain... from the physical, to the emotional, mental, and daily life - has all bundled up into a huge knot, and you just cannot manage to go on that way.
We are NEVER guaranteed anything but to "live" and then to "die".... in between things can be smooth, even, rocky, a landslide, and so often we are left wondering why the hell this happened? All of the questions, why am I being punished? Am I a "bad" person? Why can't I just have a break? Why can't something be "easy" for a change????
None of us know that answer. And throughout my entire life, most EVERYTHING has been a challenge. There are not many things for me, that have came "easy"... I worked, fought, crawled up the mountain, as the stones dug into my knees.... and slid back down again.... and I do know that only through FAITH and HOPE can I continue to one step at a time, moment by moment, then hour by hour, day by day.... week by week... and then months... years... and one day when I am no longer on this Earth... then all shall be revealed.
So, I WILL continue on with my 3rd book... and hope to finish it up on schedule by the end of the year. I WILL continue to be a voice, activist, advocate, and ambassador...
Lord willing, and my health continue to half way act right.... and hopefully the brain fog, pain and suffering may hopefully have something done about soon... either by surgery, by new medications... and so forth...
I shall give more information as the next days go along... so PLEASE continue to come and join in on my blog... and for those who have always been here to support, encourage, provide strength, faith, and prayers... I am so very grateful for all of you....
"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 leg pain. Show all posts
Showing posts with label leg pain. Show all posts
Wednesday, June 10, 2015
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.....
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