Showing posts with label pain medications. Show all posts
Showing posts with label pain medications. Show all posts
Tuesday, April 23, 2019
Wednesday, August 9, 2017
SICK and TIRED of the "stigma" placed on so many of us with Chronic Pain and just how horribly it effects our lives, I feel it's time for me to step up and also state my feelings on the subject!
For a long time, I've kept my "mouth shut" when it comes to the business over those who want to make EVERYONE, with Chronic Pain and Chronic Illnesses, look like a bunch of junkies! But, I am just too fed up with it! It's gotten to the place that rather than focus on other countries who could destroy our nation with bombs, or talk about how to "help" those with pain problems, or use their talk to make available more research dollars, funding to help those who are ill, rather than make us all feel as if we are doing something wrong.
As I use the example of someone with Diabetes, would you take away their insulin? A person with high blood pressure would you deny them medications to lower their blood pressure? I've been thru just about every type of other "pain reliever" you can imagine. chiropractors, injections into my spine and occipital nerves in my neck, injections into just about every joint on my body, I am on several medications for the Lupus and RA, yet some other medications that I had MANY SIDE EFFECTS FROM, that were supposed to help with chronic pain, I have every surgery that is a promise to help my pain, I walk daily, I don't stay sedentary, I try and do all I can to ease my pain. I've gone through NSAIDS that can cause me to have another heart attack.
My 2nd MI partially was caused from chronic pain, and after the fractures to my hip, my pain level increased, due to many things such as the change of my gait, my neck in such bad shape, that he has to "stretch" it 2 INCHES, because I lost that much disc space... So, I KNOW ABOUT ALL F THE alternatives. Some of which work wonderfully for some people. I am thrilled that some find relief from things such as Gabapentin, which caused me to "hallucinate" even on a small dose. So, after going through SO MANY YEARS, of every type of other treatment available, what "works" for me, may not be what works for someone else. "Chronic Pain" in itself is extremely complicated. Due to having SO MANY CONDITIONS, that can cause this type of pain, it's taken an "army of physicians", medications, treatments, surgeries, injections, therapy, you name it, I've done it to find "what works" for me, with the least amount of side effects possible.
So it just "burns my butt" to hear the crude and down right stupid remarks some say about us patients, that live with pain daily. I give a good example. I had NO CLUE, HOW PAINFUL, a fractured hip was, UNTIL IT HAPPENED TO ME! That was one of the most excruciating times in my life, as far as pain goes. OMG, kidney stones are horrible and unrelenting at times. But those two fractures of my right hip.... were almost unbearable. Every tiny movement caused me so much pain, I thought I would go into convulsions. Even being put on the stretcher and taken over my lawn to the ambulance, I was literally screaming, crying and probably cursing so badly and loudly, all of my neighbors heard me! I even waited over 2 HOURS, before calling the ambulance.
I wanted to "make sure" I had a fracture, and not just a "bruised hip" before calling the ambulance. Then them trying to do an X-ray or moving me in any way, I shook and screamed in so much pain. And those things are "acute pain" issues. So, you take some of those and put them with someone often daily or many times in a month's time, and see how well they would function in life for very long. I tend to be one of those people who try and not "show my pain" or illnesses in public. But, believe me just because I am not limping or using a cane, or whining and moaning in pain, does NOT mean that it's not there. So, some of you may get sick and tired of seeing me post about all of this ridiculous uproar over this so called "crisis", but I intend to keep on getting the word out as much as I can, and supporting EACH OF US, who would be "lifeless" if we had to withstand chronic pain and illnesses without any type of relief.
The LONG LIST of illnesses that can cause relentless pain are endless. You can have "diabetic neuropathy", many different types of arthritic illnesses, autoimmune illnesses and syndromes, nerve pain from degeneration of the joints, of bones, of the spine, migraines of many types now, TMJ, FM, torn muscles and ligaments, surgeries sometimes can cause pain, "neuralgia" comes from so many types of illnesses, whether sciatic nerve pain, from a lower back issue, or pain in the arms, wrists, fingers, from a cervical neck problem, or from problems with diseases causing bone pain, cancers of many types, all types of "myalgia's", torn muscles, chronic sprains, cartilage gone in joints, certain types of chronic bladder problems, certain intestinal chronic health problems, and the list goes on and on about health conditions that can cause or contribute to chronic pain and chronic illnesses.
I've decided that I am going to "fight" as much as I can online, with petitions, letters and such the ridiculous claims that "everyone" who takes a pain medication is "addicted" or an abuser. Whether it be governmental bodies, the DEA, the FDA, or the President, (HOW CAN any of those people who have NEVER HAD A SEVERE AND CHRONIC PAIN DISEASE POSSIBLY UNDERSTAND OR KNOW ALL OF WHAT WE GO THROUGH IN A SINGLE WEEK?" ALSO, I am SICK OF the health insurance companies "calling" constantly, wanting to "go over" your medications "over the phone" when NOW THEY DON'T EVEN SAY WHO THEY ARE ON CALLER ID! Now rather than saying the name of the company, Caller ID usually say "1-800" number calling... how do I KNOW THEY ARE WHOM THEY SAY THEY ARE? Why do I want to "discuss" something that honestly, is NONE OF THEIR BUSINESS! That is between MYSELF, MY PHYSICIANS, and if I NEED HELP, MY OWN PHARMACISTS? It is insane how many calls I get from so called health insurance, wanting to discuss, "this, that or the other" about my "health".... I HAVE A LIFE TOO, and I don't care to sit on the phone for an hour telling a person I don't know and have no earthly idea who they are about my medications or anything else for that matter!!!!!
We are WARNED AND WARNED ABOUT NOT GIVING OUT PRIVATE information over the phone to those we don't know.... so this is a prime example of what irritates the hell out of me!
I got a call earlier in the week, from a "guy" who I didn't even "understand" asking for me? He never said where he was from, or whom he worked for, and then when he mentions my medications, I got irritated and told him I was NOT at that time discussing it with him. In the first place, THE MAJORITY OF THE TIME, THOSE PEOPLE EITHER CANNOT SPELL
MY MEDICATIONS, OR THEY HAVE NO CLUE WHAT THEY ARE FOR! Why should I have to "explain" those things over the phone to anyone????
So, some of you may get sick and tired of my ranting on the subject, but enough is enough!
As I use the example of someone with Diabetes, would you take away their insulin? A person with high blood pressure would you deny them medications to lower their blood pressure? I've been thru just about every type of other "pain reliever" you can imagine. chiropractors, injections into my spine and occipital nerves in my neck, injections into just about every joint on my body, I am on several medications for the Lupus and RA, yet some other medications that I had MANY SIDE EFFECTS FROM, that were supposed to help with chronic pain, I have every surgery that is a promise to help my pain, I walk daily, I don't stay sedentary, I try and do all I can to ease my pain. I've gone through NSAIDS that can cause me to have another heart attack.
My 2nd MI partially was caused from chronic pain, and after the fractures to my hip, my pain level increased, due to many things such as the change of my gait, my neck in such bad shape, that he has to "stretch" it 2 INCHES, because I lost that much disc space... So, I KNOW ABOUT ALL F THE alternatives. Some of which work wonderfully for some people. I am thrilled that some find relief from things such as Gabapentin, which caused me to "hallucinate" even on a small dose. So, after going through SO MANY YEARS, of every type of other treatment available, what "works" for me, may not be what works for someone else. "Chronic Pain" in itself is extremely complicated. Due to having SO MANY CONDITIONS, that can cause this type of pain, it's taken an "army of physicians", medications, treatments, surgeries, injections, therapy, you name it, I've done it to find "what works" for me, with the least amount of side effects possible.
So it just "burns my butt" to hear the crude and down right stupid remarks some say about us patients, that live with pain daily. I give a good example. I had NO CLUE, HOW PAINFUL, a fractured hip was, UNTIL IT HAPPENED TO ME! That was one of the most excruciating times in my life, as far as pain goes. OMG, kidney stones are horrible and unrelenting at times. But those two fractures of my right hip.... were almost unbearable. Every tiny movement caused me so much pain, I thought I would go into convulsions. Even being put on the stretcher and taken over my lawn to the ambulance, I was literally screaming, crying and probably cursing so badly and loudly, all of my neighbors heard me! I even waited over 2 HOURS, before calling the ambulance.
I wanted to "make sure" I had a fracture, and not just a "bruised hip" before calling the ambulance. Then them trying to do an X-ray or moving me in any way, I shook and screamed in so much pain. And those things are "acute pain" issues. So, you take some of those and put them with someone often daily or many times in a month's time, and see how well they would function in life for very long. I tend to be one of those people who try and not "show my pain" or illnesses in public. But, believe me just because I am not limping or using a cane, or whining and moaning in pain, does NOT mean that it's not there. So, some of you may get sick and tired of seeing me post about all of this ridiculous uproar over this so called "crisis", but I intend to keep on getting the word out as much as I can, and supporting EACH OF US, who would be "lifeless" if we had to withstand chronic pain and illnesses without any type of relief.
The LONG LIST of illnesses that can cause relentless pain are endless. You can have "diabetic neuropathy", many different types of arthritic illnesses, autoimmune illnesses and syndromes, nerve pain from degeneration of the joints, of bones, of the spine, migraines of many types now, TMJ, FM, torn muscles and ligaments, surgeries sometimes can cause pain, "neuralgia" comes from so many types of illnesses, whether sciatic nerve pain, from a lower back issue, or pain in the arms, wrists, fingers, from a cervical neck problem, or from problems with diseases causing bone pain, cancers of many types, all types of "myalgia's", torn muscles, chronic sprains, cartilage gone in joints, certain types of chronic bladder problems, certain intestinal chronic health problems, and the list goes on and on about health conditions that can cause or contribute to chronic pain and chronic illnesses.
I've decided that I am going to "fight" as much as I can online, with petitions, letters and such the ridiculous claims that "everyone" who takes a pain medication is "addicted" or an abuser. Whether it be governmental bodies, the DEA, the FDA, or the President, (HOW CAN any of those people who have NEVER HAD A SEVERE AND CHRONIC PAIN DISEASE POSSIBLY UNDERSTAND OR KNOW ALL OF WHAT WE GO THROUGH IN A SINGLE WEEK?" ALSO, I am SICK OF the health insurance companies "calling" constantly, wanting to "go over" your medications "over the phone" when NOW THEY DON'T EVEN SAY WHO THEY ARE ON CALLER ID! Now rather than saying the name of the company, Caller ID usually say "1-800" number calling... how do I KNOW THEY ARE WHOM THEY SAY THEY ARE? Why do I want to "discuss" something that honestly, is NONE OF THEIR BUSINESS! That is between MYSELF, MY PHYSICIANS, and if I NEED HELP, MY OWN PHARMACISTS? It is insane how many calls I get from so called health insurance, wanting to discuss, "this, that or the other" about my "health".... I HAVE A LIFE TOO, and I don't care to sit on the phone for an hour telling a person I don't know and have no earthly idea who they are about my medications or anything else for that matter!!!!!
We are WARNED AND WARNED ABOUT NOT GIVING OUT PRIVATE information over the phone to those we don't know.... so this is a prime example of what irritates the hell out of me!
I got a call earlier in the week, from a "guy" who I didn't even "understand" asking for me? He never said where he was from, or whom he worked for, and then when he mentions my medications, I got irritated and told him I was NOT at that time discussing it with him. In the first place, THE MAJORITY OF THE TIME, THOSE PEOPLE EITHER CANNOT SPELL
MY MEDICATIONS, OR THEY HAVE NO CLUE WHAT THEY ARE FOR! Why should I have to "explain" those things over the phone to anyone????
So, some of you may get sick and tired of my ranting on the subject, but enough is enough!
Thursday, July 6, 2017
The CDC, and others in GOVERNMENT do not KNOW WHAT TRUE SEVERE DAILY CHRONIC PAIN IS LIKE FOR MANY OF US WHO ARE TRUE PATIENTS!!!!!
I am so INFURIATED at the NEWS as well as the CDC, government, and THOSE WHO SO STRONGLY OPPOSE ANYONE NEEDING PRESCRIPTION PAIN MEDICATIONS, that I HAD to get up and turn the channel a bit ago!!! I had turned my computer off earlier in the day due to severe "dry lightening and thunderstorms" BUT AFTER DINNER, I came to turn it back on and state my MIND ABOUT THIS BULL!!! I would LOVE to take ANY ONE of the people from the CDC, from the GOVERNMENT, FROM JUST PLAIN OLD OFF THE STREET folks, AND ALLOW THEM TO HAVE ALL OF MY OWN PAIN, PLUS MANY others PAIN for just ONE WEEK, WITHOUT MEDICATIONS!!!! I don't care how much you "punish" those who need the meds, and there is NOTHING ELSE that helps, THEY WILL FIND SOME WAY, SOME HOW TO GET "HIGH"... whether it is ALCOHOL, OFF THE STREET DRUGS, THAT LORD KNOWS WHAT IS IN THEM, INCLUDING HEROIN, Or anything else they can "use" to get what "WE" the NEED THE MEDS DO NOT GET AND THAT IS SOME KIND OF "HIGH" from them! Other than when I was in my teens and early 20's for sure, AND I COULD NOT GET RELIEF FROM ALMOST 2 OR 3 TIMES A WEEK SEVERE MIGRAINES, that SENT ME TO THE ER MORE TIMES THAN I CARE TO COUNT, and AT THAT TIME, for a while, I felt "something" that was kind of like giving someone an "I don't give a damned" drink, or medication that they may not take very often then YES, you may feel that "high" for a few moments, BUT those LIKE MYSELF, WHO HAVE MULTIPLE ILLNESSES, THAT CAUSE DAILY SOMETIMES SO SEVERE PAIN, THAT MEDICATIONS EVEN DO NOT GET RID OF IT ALL, WE DON'T OR I SHALL SAY I DON'T HAVE A "HIGH" FROM IT! I would GLADLY throw away ALL OF MY MEDS, If somewhere there was a "MIRACULOUS" CURE FOR lupus, RA, DDD, DJD, OSTEOPOROSIS CAUSED BY PREDNISONE, WHICH IS A NECESSARY EVIL, NOT AN OPIOIDS, BUT CAUSES MORE DAMAGE WHICH LED TO MY HIP FRACTURE.... If I could take NSAIDS, or anything else to relieve my pain, I would do it in a "New York minute"... BUT you TAKE AWAY PAIN MEDICATIONS FROM LEGITIMATE PATIENTS, and you will see MORE ALCOHOLISM, THOSE THAT CANNOT WORK, CANNOT TAKE CARE OF THEIR FAMILIES, ARE IN THE ER, HOSPITAL, AND TAKING ILLICIT MEDS THAT LORD KNOWS WHAT THEY CONTAIN... You will see a DRAMATIC RISE IN SUICIDES,, those that LIKE MYSELF, WITH A HEART PROBLEM, IF I WAS IN SO MUCH PAIN, WITHOUT MY MEDS, I WOULD PROBABLY NOT LIVE 6 MONTHS, THE REST OF MY BODY, INCLUDING MY HEART, would NOT be able to take the pain!!! It is a strain not just "where it hurts" but all over, and it effects you mind, the rest of your body and your soul, spirit and takes away all quality of life! One cannot raise their kids, work, or even there would be DAYS, WEEKS, MONTHS SOME WOULD BE COMPLETELY BEDRIDDEN, without RELIEF!!!!! I am SO SICK of BEING PUT IN A STEW POT, AND MIXED IN WITH THOSE WHO "CHOOSE TO ABUSE".... NOT ALL OF US ARE "ADDICTS... I don't take ANY of my medications, NONE FOR SOME KIND OF "ESCAPE OR HIGH" OR WHATEVER those that abuse get... IN FACT, I've NEVER HAD ILLICIT MEDICATIONS, other than at about the age of 23, I smoked a "bit of weed" and I HATED THE FEELING IT GAVE ME, same way with DRINKING ALCOHOL, I don't like the way I feel or that "loss of control" it causes... of course many of us as younger crowds years ago, may have drank too much, or experimented with "not legal things" yet most of my generation did not even know about "illegal drugs" in high school. It was not something MANY OF US HEARD ABOUT OR ESPECIALLY HAD ANYWAY WE WERE AROUND THAT TYPE OF THING".... I fully intend, on when I "SETTLE DOWN" TO GIVE THE CDC, THE GOVERNMENT, BOTH STATE AND FEDERAL, and ANYONE ELSE, a "PIECE OF MY MIND" ABOUT this bull.... you take a couple of states, with doctors who are NOT real doctors, or have "backwards" folks that use everything else also WITH prescriptions, and they with or without those meds would either wind up in the ER overdosed, or would find a way to get what they want, off the internet. or cross borders, IF THEY CHOOSE THAT LIFE, THEN NOTHING ANY ONE ELSE DOES WILL STOP THEM! I AGREE with 'regulation" somewhat, but most CREDIBLE DOCTORS, will NOT cause "harm" to their patients! By any type of medication, etc.... so yes kick out the "bad seeds" but leave those who truly are chronically in daily pain (HELL they were even stating some "SEVERE CANCER PATIENTS" MAY NOT NEED PAIN MEDICATIONS! ... WELL, some may NOT, but I would 'ASSUME" many would never go through chemo, radiation, and continue to want to live if their disease brought them intense, severe, and daily pain!!!!! I am sorry if I OFFEND ANYONE" But I am really perturbed on this subject!
Friday, February 24, 2017
Friday's Addition of my Newspaper "Life Chronic Pain & Autoimmune Systemic Diseases & Dementia
For All of you that may not know that I also have a Daily Newspaper that contain all types of articles about Chronic Pain, Dementia, RA, other Autoimmune Diseases, Lupus, and everything that pertains to these types of Systemic Illnesses, Chronic Illnesses, Dementia and Chronic Pain Issues.
From articles about medications, and the "trauma" we are in as far as getting our pain and Opioid prescriptions, our doctors, the government involvement in medications, Chronic Pain people and how more and more people are becoming "victims" of these diseases, Sjogren's is another one.
There are articles about Cannabis and how it is helping some Chronic Pain patients, and other alternative types of treatments, from Acupuncture, Yoga, other relaxation treatments, and the latest on research of new and upcoming medications and other things to help ALL of the horrible illnesses and diseases, plus I also put my blog posts there usually. But, there are video's and articles from anywhere like the Arthritis Foundation, to Lupus, and the Alzheimer's and Dementia Non-Profits.
Please stop by daily and check it out. I would really love to have you come by. I update at least once daily, sometimes more than that, so it is always current.
http://news.autoimmunearthriticsystemiclife.com/#
From articles about medications, and the "trauma" we are in as far as getting our pain and Opioid prescriptions, our doctors, the government involvement in medications, Chronic Pain people and how more and more people are becoming "victims" of these diseases, Sjogren's is another one.
There are articles about Cannabis and how it is helping some Chronic Pain patients, and other alternative types of treatments, from Acupuncture, Yoga, other relaxation treatments, and the latest on research of new and upcoming medications and other things to help ALL of the horrible illnesses and diseases, plus I also put my blog posts there usually. But, there are video's and articles from anywhere like the Arthritis Foundation, to Lupus, and the Alzheimer's and Dementia Non-Profits.
Please stop by daily and check it out. I would really love to have you come by. I update at least once daily, sometimes more than that, so it is always current.
http://news.autoimmunearthriticsystemiclife.com/#
The name of the Newspaper is:
Life Chronic Pain & Autoimmune Systemic Diseases & Dementia®
Wednesday, January 11, 2017
Chronic Pain Patients and the "absurd" information on abuse and New Medication for pain with Abuse Deterrent in it
https://www.madinamerica.com/…/stop-the-war-on-chronic-pai…/
I found this article interesting and more to the point when "chronic pain patients" are attacked for something they are NOT causing. I great example (I was not attacked but) since I had to have surgery yesterday, of course I had to be "NPO" thus I could have have ANYTHING to eat, drink and even my meds were taken away after midnight... all of which is necessary, BUT my surgery was NOT until 1PM the next day!
So, like MOST told me and I know myself, I could have been given my critical meds, such as my muscle relaxer, pain med, & my anxiety med...but I was made to wait UNTIL AFTER 3:30PM or longer, rather than just stopping it at 8 hours...
IF the surgery would have been early morning such as 6 or 7 AM etc then it would make sense.. anyway, same with this... "true and legitimate patients are being "punished" or horrified, because with all of the "crap" out there in the news we fear being without our meds.... yesterday, I was in horrid pain by the time I got to the hospital after waiting so long, then checking in, getting prepped for surgery, & then going under (which I was thrilled to go under anesthesia, knowing then I would be free of pain, plus I would FINALLY get some pain meds for relief....
It is a nightmare if you live in terrible pain daily, or almost daily, and then are terrified all of a sudden your meds could be jerked away... so those that don't understand, should be "educated" on just how chronic pain invades and takes over your life... and quality of life goes null and void, for the patient, family and way of life...
And from the Pain News Network....
https://www.painnewsnetwork.org/stories/2017/1/9/fda-approves-new-long-acting-painkiller
I found this article interesting and more to the point when "chronic pain patients" are attacked for something they are NOT causing. I great example (I was not attacked but) since I had to have surgery yesterday, of course I had to be "NPO" thus I could have have ANYTHING to eat, drink and even my meds were taken away after midnight... all of which is necessary, BUT my surgery was NOT until 1PM the next day!
So, like MOST told me and I know myself, I could have been given my critical meds, such as my muscle relaxer, pain med, & my anxiety med...but I was made to wait UNTIL AFTER 3:30PM or longer, rather than just stopping it at 8 hours...
IF the surgery would have been early morning such as 6 or 7 AM etc then it would make sense.. anyway, same with this... "true and legitimate patients are being "punished" or horrified, because with all of the "crap" out there in the news we fear being without our meds.... yesterday, I was in horrid pain by the time I got to the hospital after waiting so long, then checking in, getting prepped for surgery, & then going under (which I was thrilled to go under anesthesia, knowing then I would be free of pain, plus I would FINALLY get some pain meds for relief....
It is a nightmare if you live in terrible pain daily, or almost daily, and then are terrified all of a sudden your meds could be jerked away... so those that don't understand, should be "educated" on just how chronic pain invades and takes over your life... and quality of life goes null and void, for the patient, family and way of life...
And from the Pain News Network....
https://www.painnewsnetwork.org/stories/2017/1/9/fda-approves-new-long-acting-painkiller
FDA Approves New Long Acting Painkiller
Just came out a couple of days ago!
Thursday, October 13, 2016
News From National Pain Report and Dealing with the Congress, CDC, and Government and Chronic Pain, Medications and much more!!!!
Chronic Pain Patient Rally Set for Washington D.C.
PLEASE GIVE THIS A READ! IT WAS in my newspaper a couple of days ago, and I wanted to post it here, separately because I know MANY of you are TERRIFIED of what us, as Pain Patients, Chronically Ill, and Already been through the mill, many times shall do, if things change drastically in regard to our medications.... So, I felt this needed to "stand out"... boy I need to again, since it has been awhile post my battle since the age of 17 years old with chronic pain, that started with severe migraines, and never stopped, going into all different types of chronic illnesses, that cause horrid pain....
The YEARS I SPENT just "trying" to find a doctor, a legitimate pain physician to treat me.... and it was only about 10 years ago, I FINALLY FOUND HIM IN DALLAS TX! The man is a true "hero" in my book for sure....
http://nationalpainreport.com/chronic-pain-patient-rally-set-for-washington-d-c-8831671.html
Wednesday, March 16, 2016
Nightly News, the CDC and Those that have NO CLUE what "Chronic Pain" and trying to Live is all about!
As
I said on my other post, I was so mad at the Nightly News with Lester
Holt last night I could have screamed! They only tell a "piece" of the
story, NOT the stories of us who would not be able to have a "life" or
any quality of life if we were not able to have physicians help us take
our pain down to where we can "stand it"... For ONE NO medication "takes
all of the pain away".... but it does give us a place where we can
"live" with it. It makes it bearable, most days. And for
them to sit there and speak like this is something that is just a
"surgery" issue etc...without even mentioning how many of us would not
be able to take care of our families, work, do anything at our homes,
nothing... we would only be able to sit, lay, or try and "live" with
severe pain, that is what I call intractable and unbearable! without my
great physicians and my medications, and that is not just pain
medications, but my RA meds, my heart medications, Lupus medications,
and so forth, I would have no life, I would never be able to take care
of me, and certainly not be able to somewhat help my Mom... and try and
do advocacy work, and write... my life would NOT be life but living
hell! I am seriously thinking about writing the Nightly News and telling
them how I felt about their "one sided" view of this situation.... and I
have to wonder "whom is lining" whose pockets, when it comes to the
CDC, Congress and all of these people that have NO CLUE what it is like
to have a disease that brings on such an amount of horrid pain daily...
they would think differently if it were them or one of their loved
ones...
This is what I am speaking of on the Nightly News from Last night March 15th
I sent my email to the Nightly News about this story last night. I hope you also take a moment to respond!
Tuesday, January 19, 2016
Pain News Network Articles and Information
NO "Epidemic" of Overdoses.... see the article below... great example and reasoning...
http://www.painnewsnetwork.org/stories/2015/6/12/there-is-no-epidemic-of-painkiller-overdoses#.Vp5PM_Y_Lh8.facebook=
here is another article from The Pain News Network talking about "urine tests"... and I agree they add 100's of dollars to a patients bill, and many of the times patients take them, due to metabolism, or NOT DOING the correct TEST (which I know for a fact had happened to a friend of mine) those "pee" tests can be NOT right! I usually wonder why the hell they bother giving me one... my pain pump gives me medications all the time, I take pain pills along with the medication in the pump, plus muscle relaxers, diazepam.... and so forth. I certainly do not NEED anything else, and would not dare even drink since now the pump is in (new new one and running) and I am almost back up to my dose before it had a motor stall. So, I know they check to make sure you are "taking" the medications... and of course if you have other substances that should NOT be in your system... the "reasons" somewhat make sense... BUT as I said, there are some of these medications that WILL NOT SHOW properly if they don't do a "special" test at the lab they are sent to. I can relate to the story in another article about the young woman who "fears" her appts at her pain doctor's. It used to be that way for me... and still is at times... we have such a horrible time getting the medication that goes into my pump.. and it is NOT expensive... that is the weird thing... it is actually much less expensive that most oral medications. But, you always go in with the fear that you won't get your medications, or something has changed (like now my pain doctor has a new rule you must have your medications in a "lock box" or safe" ) Which is a very good idea, if you have anyone else in your home... or have company over etc. But, I am not sure where a man standing in the waiting room got this idea, but he was asking about the lock box, and he was under the impression he needed to have his wife take a photo of her and the lock box and bring to the doctors office for her chart... I did NOT read it like that... but did understand the doctors are trying to get the CDC off their backs, so they TELL patients that, so patients are more aware of "protecting" their medications. NOT leaving them out for anyone else to get hold of... and keeping them in a safe place, especially as I said, if you have others in your home or people that visit, it is a good idea to lock your meds up. One time years back, I had a medication that was a nasal spray for migraines. I had picked up a brand new bottle from the pharmacy, but it was one of those HOT TX SUMMER days... and I guess I did it at lunch time and left it in my car by accident when I went back to work... Well the entire bottle, "siphoned" it's way out of the container, and into the other bottle it was in... plus it was such a tiny amount of liquid it has almost already vaporized by that evening when I got home... I had mortal HELL getting a replacement. I mean it was evident, when I took the bottle in and showed my doctor, then the pharmacist what had happened... but believe me, after that, I was much more careful about where I left my medications. I am so diligent about where my scripts go, that I take them to the pharmacy immediately, and if I don't need them that day, have them on hold for when I do... that way, I don't misplace it and have hell... no matter whether a pain medication or whatever type of medication it is... I try to turn those scripts in immediately. Plus my pain medications are from a specialty pharmacy... so I don't do anything but request my meds when they are due from my doctor, and they take care of the rest. There are times though that they "delay" getting the script to the pharmacy, and I am on pins and needles, if I happen to be running low of meds... so I totally relate to sometimes being "fearful" of seeing your pain specialist...
http://www.painnewsnetwork.org/stories?category=Opinion
Above is a link to another article "Why I am Afraid of going to my Pain Doctor Appts"
http://www.painnewsnetwork.org/stories/2015/9/20/cdc-opioid-guidelines-would-institutionalize-malpractice#at_pco=smlrebh-1.0&at_si=569e5754f5ee1daa&at_ab=per-2&at_pos=0&at_tot=5
Tuesday, February 24, 2015
Life In A "Goldie Locks" Kind of Cinderella Fashion - Then realizing what was back then was a "view" from a childs eyes...
I've done quite a bit of posting, writing, blogging, and more posting today. More than I've done in quite a while for a change. It just seemed like since the weather is making its turn here in my neck of the woods for what sounds like worse for wear, the dreary, rainy, cloudy, soon to be falling sleet and freezing rain shall cometh as the day gets into the late afternoon and evening.
I've put some things up here, on my blog, along with some posts on Facebook, several "Tweets", and some Pinterest postings along with the entire thing also have kind of brightened up my pages on those places that were beginning to feel more staggered, than normal. Of course I go through sometimes even a week or possible almost two weeks, that living daily life, tends to be erratic, errand filled, running hereth, thereth, and yonder... and feeling too worn for wear, when it comes to being online, or even on the computer to write in my book. It comes with the territory of having some of the chronic illnesses I live with. They at times seems to inhabit more of my body, mind and spirit, than just "my own self".
That may sound a bit crazy, and with the amount of issues lately with brain fog, pain, forgetfulness, and sometimes feeling just beyond the point of lazy thus I see at a breaths space, that without my watchful eye, Lupus, RA, Sjogren's, Raynaud's and the rest can slip up behind you when you least expect it and take over your body, heart, and mind much like some alien force that presented itself from a foreign planet.
As I was taking a shower earlier this afternoon, and thinking about my life, it dawned on me how things are so very different now. When I say that I mean more of my own perspective about my life in a very personal sense. When I was growing up in the 60's and 70's... little did I know how much influence my younger years would have on me, when I was 50 and over.
Back then I never gave thought to "money". Of course I knew my family were not "rich" or even very affluent. I always lived on the "other side of town". The North part of my hometown is where the larger homes were built, mostly brick, and were a great deal much more expensive than the small little 2 bedroom, 1 bath room wooden home I lived in. In fact, I was born, raised there, and my Mom after all these years still resides in that exact house. So, it is truly "home" for me.
Mom was about 25 years old when I was born. I get the impression she never really "dated" all that much before her and Dad met. He happened to be almost 13 years OLDER than her. I guess back then, age like that was not all that huge of a factor. Most women in the 50's and 60's were home makers. They took care of the kids, house, cleaning, cooking and so forth. The Dads, Husbands were the "bread winners". They went out into the world and make a living for the family. We always had two vehicles. We usually had a "good" used car for Mom to drive me to school, to the market and errands. Or if we went on vacation we usually went in the car. Dad just about always had a truck. He began with a Chevrolet and the last one Mom traded in after he passed away was also a Chevrolet. Dad bought a brand new pickup about every 5 to 7 years. Mom had worked until I started school. When I began 1st grade she stayed home and Dad as I said was the provider. Dad and Mom were both born and somewhat remember the very "harsh" times of the Depression. Dad of course, much more than Mom. He was born in 1923. He remembered outhouses, no indoor plumbing, wells, hoeing cotton, having a farm, garden, chickens, cows you milked, flour in huge cotton sacks (Mom remembers that also. Her Mom made them underwear out of the flour sack material)!
As the years went by, of course my entire "adult" life was somewhat different than my parents. I worked almost the entire time, from the day I graduated early from High School, until the day I resigned my last job in Seattle due to health issues, I always worked. If I had relied on money coming in from either of my first two husbands, I would have never financially survived. So, things that my Mom never taught me much of, working outside the home, clothes, makeup, and all of the "girlie-girl" things... having your nails done, having your hair cut differently, even having a bit larger home, a new car, 2 kids, rather than like myself an only child, and then allowing my kids to kind of "learn their own way" around the world. I taught them how to take care of themselves. I wanted my daughter to be able to be "her own woman". Never did I want her to have to rely on some guy to take care of her. I never wanted to feel she had to "stay" in an abusive relationship, or put up with someone not treating her like a woman should be treated, due to thinking she "had to" stay. Of course I wanted both of my kids to learn how to stand up on their own two feet. But, all the time I worked and was out of the house, I also needed them to be responsible enough to come home after school (when they were old enough), do their homework and chores, and be there when I came home from work, college or both.
My Dad never wanted me to "play in the band", or try out for any type of extra things in school. He was so strict, he never allowed me to go to football games like the other kids did on Friday night. And by the time he finally DID allow me to do a few things, he would either have to drive me there, pick me up, and was just so very overprotective of me. How I ever learned anything as far as taking care of myself... was either through an innate nature I was born with, or because I had the dearest next door neighbor who took me under her wing, and taught me so much, from crocheting to being a candy striper at the hospital... all of the things I learned were from her, or from my own trial and error.
I guess I thought life was kind of the way Mom and Dad lived it. He came home from work for dinner (he worked nights for the most part when I was a teenager), and unless he "okayed" me going to my cousins house for the weekend, or her coming over, I was alone with no siblings anywhere near close to my age. I have a half-brother who is 18 years or more older than me. My Dad was 37 when I was born, and my Mom 25 years old. So, I guess they decided that after Mom had a couple of miscarriages after me, that having one child was in their cards.
As I had said in the beginning of this, being "affluent" or having money was something as children we don't think much about. Or back then all of that type of thing was not talked about around me. I raised my kids so much differently. They knew the "value of a dollar" at an early age. I wanted them to be ready when the time came to face the world head on. Not like myself, who was hit right in the face by the time I was 19, had my son, and was paying all the bills myself.
I don't resent that my parents did or did not do things a bit differently. But, I do often wish, they would have given me "eyes" and a "mind" earlier in life to accept so many of the things that life hands us, and if we don't have the understanding, we are not able to deal with it so well.
Dad hated doctors, and hated medications. He just refused with the exception of when he was extremely ill, to see his doctors, and just would not take the medications they gave him. He thought it was all a bunch of bull, and any medication you got on was almost like a sign of weakness. So, when I began to have severe migraines at 17, little did I know just how horrid the next 15 to 20 years of my life would be. From doctor to doctor, from time lost from work, medications that did not work, and Dad never really suffered a "headache" of any kind. So, he could not "get" what a "migraine" was, and why I needed medications for them. He would get almost mad if he knew I was on medication. His Mom back when he was very young, had been ill probably with cancer back then. The only thing they could do in those years was keep someone comfortable, and that usually meant morphine. I those times no one knew that "morphine" was habit forming etc. They knew it helped with pain relief for bad pain, and the doctors gave it out to those that were in bad pain such as cancer. Well, I guess probably my Dad watched his Mom go downhill, and then between the medication and the cancer she was not "lucid" at times. So, he thought that "any" medication could cause you to "lose your mind"... and he definitely did not believe in taking any type of pain medication. So, there were times I just could not even tell him about me being home sick with a severe headache, or the many times I was in the ER with one so bad they had to give me IV medications just to get rid of it.
Even back then, as young as I was, I had joint issues. It began with an accident playing baseball with some of my cousins, and I got used for "2nd base"... and the torn meniscus had to be repaired in that knee. I spent 7 days in the hospital in traction after that surgery at 15. By the time I was 21, I had a 2nd surgery on that knee, and even then I was showing signs of arthritis. Yet, the doctors just didn't put two and two together... to see there was probably much more going on that just a knee injury. After that I began to have various joint problems. Pain, stiffness, severe pain, freezing up, until I had a shoulder, an elbow operated on, and after that, I underwent several more scopes on both shoulders, knees, and then of course replacements of my knees and my right shoulder.
Life for me as a child was days of playing alone outside in the good months, with my dolls, my table and chairs, and as I said, not knowing what really was going on through those years. Even in my teens, I just knew I had an overly strict Dad, that never allowed me to "spread my wings"... he didn't even "encourage" me to go to college... yet I did go and finally got my Associates Degree after years of going at night after work, to get my degree. I am told I am an incredible oil painter, and loved taking those lessons. I took piano for years, and loved that. Even the vacations that my parents took me on, they were nice, and I am glad they took me, but after I was grown I got to go snow skiing, go to Vegas, went to concerts, to Hot Springs, and did many things that my parents never would have tried or done.
We always want to love and "shelter" our kids from the harms of this world. But, if we "shelter them" too much, then they are not prepared for what the world holds later... and all of us know now it just gets worse with each passing year.
My Dad never understood cable TV or Dish, he never understood a cordless phone, or a CD player or DVD player. He certainly did not get a cell phone, computer, or much of anything that was "electronic" in nature at the time all of the digital, cell, and those types of things came out.
I will end this for now, on a note, that I am not upset, nor do I blame my Dad or Mom for where I feel I may have not gotten as far in life as I wanted, when it comes to things I wanted to do, places I wanted to go... and thank goodness I didn't raise my two like that. They "get" the world... but I just hope that people give their kids what they need, that will help them grow into caring, loving, and knowledgeable adults, that can "conquer" anything, and not be scared to do things in life. I felt kind of "shut off" from the real world back then...
I've put some things up here, on my blog, along with some posts on Facebook, several "Tweets", and some Pinterest postings along with the entire thing also have kind of brightened up my pages on those places that were beginning to feel more staggered, than normal. Of course I go through sometimes even a week or possible almost two weeks, that living daily life, tends to be erratic, errand filled, running hereth, thereth, and yonder... and feeling too worn for wear, when it comes to being online, or even on the computer to write in my book. It comes with the territory of having some of the chronic illnesses I live with. They at times seems to inhabit more of my body, mind and spirit, than just "my own self".
That may sound a bit crazy, and with the amount of issues lately with brain fog, pain, forgetfulness, and sometimes feeling just beyond the point of lazy thus I see at a breaths space, that without my watchful eye, Lupus, RA, Sjogren's, Raynaud's and the rest can slip up behind you when you least expect it and take over your body, heart, and mind much like some alien force that presented itself from a foreign planet.
As I was taking a shower earlier this afternoon, and thinking about my life, it dawned on me how things are so very different now. When I say that I mean more of my own perspective about my life in a very personal sense. When I was growing up in the 60's and 70's... little did I know how much influence my younger years would have on me, when I was 50 and over.
Back then I never gave thought to "money". Of course I knew my family were not "rich" or even very affluent. I always lived on the "other side of town". The North part of my hometown is where the larger homes were built, mostly brick, and were a great deal much more expensive than the small little 2 bedroom, 1 bath room wooden home I lived in. In fact, I was born, raised there, and my Mom after all these years still resides in that exact house. So, it is truly "home" for me.
Mom was about 25 years old when I was born. I get the impression she never really "dated" all that much before her and Dad met. He happened to be almost 13 years OLDER than her. I guess back then, age like that was not all that huge of a factor. Most women in the 50's and 60's were home makers. They took care of the kids, house, cleaning, cooking and so forth. The Dads, Husbands were the "bread winners". They went out into the world and make a living for the family. We always had two vehicles. We usually had a "good" used car for Mom to drive me to school, to the market and errands. Or if we went on vacation we usually went in the car. Dad just about always had a truck. He began with a Chevrolet and the last one Mom traded in after he passed away was also a Chevrolet. Dad bought a brand new pickup about every 5 to 7 years. Mom had worked until I started school. When I began 1st grade she stayed home and Dad as I said was the provider. Dad and Mom were both born and somewhat remember the very "harsh" times of the Depression. Dad of course, much more than Mom. He was born in 1923. He remembered outhouses, no indoor plumbing, wells, hoeing cotton, having a farm, garden, chickens, cows you milked, flour in huge cotton sacks (Mom remembers that also. Her Mom made them underwear out of the flour sack material)!
As the years went by, of course my entire "adult" life was somewhat different than my parents. I worked almost the entire time, from the day I graduated early from High School, until the day I resigned my last job in Seattle due to health issues, I always worked. If I had relied on money coming in from either of my first two husbands, I would have never financially survived. So, things that my Mom never taught me much of, working outside the home, clothes, makeup, and all of the "girlie-girl" things... having your nails done, having your hair cut differently, even having a bit larger home, a new car, 2 kids, rather than like myself an only child, and then allowing my kids to kind of "learn their own way" around the world. I taught them how to take care of themselves. I wanted my daughter to be able to be "her own woman". Never did I want her to have to rely on some guy to take care of her. I never wanted to feel she had to "stay" in an abusive relationship, or put up with someone not treating her like a woman should be treated, due to thinking she "had to" stay. Of course I wanted both of my kids to learn how to stand up on their own two feet. But, all the time I worked and was out of the house, I also needed them to be responsible enough to come home after school (when they were old enough), do their homework and chores, and be there when I came home from work, college or both.
My Dad never wanted me to "play in the band", or try out for any type of extra things in school. He was so strict, he never allowed me to go to football games like the other kids did on Friday night. And by the time he finally DID allow me to do a few things, he would either have to drive me there, pick me up, and was just so very overprotective of me. How I ever learned anything as far as taking care of myself... was either through an innate nature I was born with, or because I had the dearest next door neighbor who took me under her wing, and taught me so much, from crocheting to being a candy striper at the hospital... all of the things I learned were from her, or from my own trial and error.
I guess I thought life was kind of the way Mom and Dad lived it. He came home from work for dinner (he worked nights for the most part when I was a teenager), and unless he "okayed" me going to my cousins house for the weekend, or her coming over, I was alone with no siblings anywhere near close to my age. I have a half-brother who is 18 years or more older than me. My Dad was 37 when I was born, and my Mom 25 years old. So, I guess they decided that after Mom had a couple of miscarriages after me, that having one child was in their cards.
As I had said in the beginning of this, being "affluent" or having money was something as children we don't think much about. Or back then all of that type of thing was not talked about around me. I raised my kids so much differently. They knew the "value of a dollar" at an early age. I wanted them to be ready when the time came to face the world head on. Not like myself, who was hit right in the face by the time I was 19, had my son, and was paying all the bills myself.
I don't resent that my parents did or did not do things a bit differently. But, I do often wish, they would have given me "eyes" and a "mind" earlier in life to accept so many of the things that life hands us, and if we don't have the understanding, we are not able to deal with it so well.
Dad hated doctors, and hated medications. He just refused with the exception of when he was extremely ill, to see his doctors, and just would not take the medications they gave him. He thought it was all a bunch of bull, and any medication you got on was almost like a sign of weakness. So, when I began to have severe migraines at 17, little did I know just how horrid the next 15 to 20 years of my life would be. From doctor to doctor, from time lost from work, medications that did not work, and Dad never really suffered a "headache" of any kind. So, he could not "get" what a "migraine" was, and why I needed medications for them. He would get almost mad if he knew I was on medication. His Mom back when he was very young, had been ill probably with cancer back then. The only thing they could do in those years was keep someone comfortable, and that usually meant morphine. I those times no one knew that "morphine" was habit forming etc. They knew it helped with pain relief for bad pain, and the doctors gave it out to those that were in bad pain such as cancer. Well, I guess probably my Dad watched his Mom go downhill, and then between the medication and the cancer she was not "lucid" at times. So, he thought that "any" medication could cause you to "lose your mind"... and he definitely did not believe in taking any type of pain medication. So, there were times I just could not even tell him about me being home sick with a severe headache, or the many times I was in the ER with one so bad they had to give me IV medications just to get rid of it.
Even back then, as young as I was, I had joint issues. It began with an accident playing baseball with some of my cousins, and I got used for "2nd base"... and the torn meniscus had to be repaired in that knee. I spent 7 days in the hospital in traction after that surgery at 15. By the time I was 21, I had a 2nd surgery on that knee, and even then I was showing signs of arthritis. Yet, the doctors just didn't put two and two together... to see there was probably much more going on that just a knee injury. After that I began to have various joint problems. Pain, stiffness, severe pain, freezing up, until I had a shoulder, an elbow operated on, and after that, I underwent several more scopes on both shoulders, knees, and then of course replacements of my knees and my right shoulder.
Life for me as a child was days of playing alone outside in the good months, with my dolls, my table and chairs, and as I said, not knowing what really was going on through those years. Even in my teens, I just knew I had an overly strict Dad, that never allowed me to "spread my wings"... he didn't even "encourage" me to go to college... yet I did go and finally got my Associates Degree after years of going at night after work, to get my degree. I am told I am an incredible oil painter, and loved taking those lessons. I took piano for years, and loved that. Even the vacations that my parents took me on, they were nice, and I am glad they took me, but after I was grown I got to go snow skiing, go to Vegas, went to concerts, to Hot Springs, and did many things that my parents never would have tried or done.
We always want to love and "shelter" our kids from the harms of this world. But, if we "shelter them" too much, then they are not prepared for what the world holds later... and all of us know now it just gets worse with each passing year.
My Dad never understood cable TV or Dish, he never understood a cordless phone, or a CD player or DVD player. He certainly did not get a cell phone, computer, or much of anything that was "electronic" in nature at the time all of the digital, cell, and those types of things came out.
I will end this for now, on a note, that I am not upset, nor do I blame my Dad or Mom for where I feel I may have not gotten as far in life as I wanted, when it comes to things I wanted to do, places I wanted to go... and thank goodness I didn't raise my two like that. They "get" the world... but I just hope that people give their kids what they need, that will help them grow into caring, loving, and knowledgeable adults, that can "conquer" anything, and not be scared to do things in life. I felt kind of "shut off" from the real world back then...
Sunday, January 11, 2015
Having A Life of Chronic Pain & Living It is no "Piece of Cake" - not even in the movie...
After watching the trailer of this movie, reading about it, hearing what Jennifer Aniston said about it in her own words, then to see that Ann Palmer the President and CEO of the Arthritis Foundation is not just endorsing the movie, she actually attended a "preliminary get together" about the film with Jennifer Aniston, Stacey Courtney, the stunt coordinator in the movie, that took place in LA, when the limited screening of the Film came out on Jan 6th. Aniston talked about things she prepared herself for in order to make the movie, which included gaining a bit of weight, not exercising and going without makeup in order to "get into" the character role. Stacey, that was like a mentor to Jennifer had also been in an accident that left her with chronic pain, so she was able to help the movie portray a great deal of the "real" life of those of us dealing with chronic illnesses, diseases, and chronic pain....
Here is the URL to the information about the movie, which is presented on the AF website: http://www.arthritis.org/cake/
I feel that this movie, will move many of us into tears... for "we" are going to know the all too familiar events that take place. I've heard she fits the part very well, and through herself into the character, by doing things or not doing things, that we also totally understand. Many of us find there is not enough energy or spoons, of whatever you use to talk about the amount of energy you have for any one given day... most of the time doing makeup and hair... get left off the days events because we know if we do some of that, the energy we need for other errands, doctors appointments, groceries... or going out with our friends and family. I am truly anxious to see this, and now after Ms. Palmer from the AF is also announcing it on the AF site, I found it even more intriguing.
I believe the public opening is officially around January 28th or so... I just hope it does portray a very detailed and accurate view to others, caretakers, family, friends, and even strangers as to why we truly in our everyday lives live with. You can explain and explain, yet at times unless that person is also not able to understand all of the rawness, the vunerable ways we all too often feel when the pain beats us down so much, that it is difficult to think about another day of feeling like you do. It seems EVEN WITH the PAIN PUMP, the "breakthrough pain medications", muscle relaxers and everything else we ingest, or do, from exercise, to aromatherapy... to going to the Chiropracter, to acupuncture... creams, salves, lotions, you name it to find some kind of relief from the moment to moment night mare of ongoing pain.
http://www.arthritis.org/about-us/news-and-updates/cake-a-painful-slice-of-life.php
Here is the URL to the information about the movie, which is presented on the AF website: http://www.arthritis.org/cake/
I feel that this movie, will move many of us into tears... for "we" are going to know the all too familiar events that take place. I've heard she fits the part very well, and through herself into the character, by doing things or not doing things, that we also totally understand. Many of us find there is not enough energy or spoons, of whatever you use to talk about the amount of energy you have for any one given day... most of the time doing makeup and hair... get left off the days events because we know if we do some of that, the energy we need for other errands, doctors appointments, groceries... or going out with our friends and family. I am truly anxious to see this, and now after Ms. Palmer from the AF is also announcing it on the AF site, I found it even more intriguing.
I believe the public opening is officially around January 28th or so... I just hope it does portray a very detailed and accurate view to others, caretakers, family, friends, and even strangers as to why we truly in our everyday lives live with. You can explain and explain, yet at times unless that person is also not able to understand all of the rawness, the vunerable ways we all too often feel when the pain beats us down so much, that it is difficult to think about another day of feeling like you do. It seems EVEN WITH the PAIN PUMP, the "breakthrough pain medications", muscle relaxers and everything else we ingest, or do, from exercise, to aromatherapy... to going to the Chiropracter, to acupuncture... creams, salves, lotions, you name it to find some kind of relief from the moment to moment night mare of ongoing pain.
http://www.arthritis.org/about-us/news-and-updates/cake-a-painful-slice-of-life.php
Tuesday, November 18, 2014
The Good, The Great, The Days you feel like NO ONE Gets IT!!!! I CANNOT BREATHE
I've just about had it with everything. I cannot stand when someone
wants ME to be at their beckon call. But, when I do not hear a word and
am suddenly "cut off" it seems, I cannot just hop up and fly off for 3
or 4 days for an event. I am really upset, hurt and pissed that I am
"used" when they want me. Then they get me all hyped up to make another
trip that is supposed to be the first part of December. Now I cannot get
a response by email at all. It is like I am a "stranger"
and Don't Exist... but if they need me in the future it will be
expected for me to "jump" up and do exactly what they want and when, and
fore go the thought that I am chronically ill, and I can't just take
off at a moment's notice. And if I find out ANY of my "SO-CALLED"
friends have had a thing to do with it, I will really be peeved.... but I
can see a couple of them "climbing" the ladder of "fame"... by running
over others to do so... anyway, I am just about finished with it all. I
am going to take all of next year, or ever how much it takes, which
maybe a year, less or a bit more, and write my book. I am sick of
putting it off for "trivial" pursuits that now seem like it does not
matter much what the hell I bent over backwards to do and help out with.
I am no more than someone that is taken advantage of due to the fact of
my passion about helping others. Then I am scooped up and heaved in a
corner when they are "through" using me. I have been having horrid,
night terrors, now for about 2 months or more... and last night really
told it all. It was so bad, I was screaming and crying so much, I woke
Jim up and he had to come out of the bedroom to check on me. Then it
took me almost a half hour to truly settle down and figure out it was a
night terror and not real. Yet, it did finally get through to me, when
in my nights sleep, I am being put down, picked on, cast away to the
sides, and everyone ignoring me, treating me like dirt, so badly that I
could not even breathe... which woke me up, because I felt I was
literally suffocating... and could not breathe... I am being "drowned"
by the very thing I loved to do the most... well 2nd to my writing and
blog... and that is my volunteer work... so I am bowing out for the most
part, to allow those who choose to cram their "high heels" in my back
as they walk all over me... (I saw this when I worked for a woman
boss)... petty jealousy, wanting to take over and get credit for
everything, taking someone's else hard work and saying it is theirs, and
the subject matter goes on and on... well, I am pulling those damned
"heels" out of my back, I am going back to write my 3rd book, keep up my
blog, and keep to myself... so I may not show up or say as much here
especially after the holidays are over. I feel I've been "used and
abused" enough, and I am freaking sick of being tortured during my
waking hours and it causing me to having horrid night terrors... it is
time to get out of that "ladder climbing" crap....
Some of you may wonder why I get "caught up" in all of this. Well, for one thing I take my "advocacy", "Activism", my "Volunteering", my writing, blogging, and being An Ambassador, as well as a "general spokesperson" for those with illnesses, chronic in nature, those that we know will NEVER go away more than likely in our lifetimes, and so my dream is to "build a bridge" to future generations where they WILL have answers, as to why, what, how, when, where... and possibly a way to just say NO, to some horrid, chronically painful, life shattering chronic pain and illnesses. So, whether I am writing a blog post, or posting something in Facebook, or reading someone posts... whether I am "helping" a group, or Foundation... whether I am trying to help several causes and Foundations by "lending my voice and own personal experiences to them, in order to get OUR POINTS across to Congress, to the nation, to our own communities, even to our family and friends, when I am doing any and all of that, then I am serious about my "job". I don't take being an advocate for others lightly. I take it as I am trying my very best to try those out there, that either can't step forward, due to family, illness, lack of funds, or any number of reasons some people can't "lend a volunteering hand". There are those that are "shy", or they are raising families, or they are just too ill, to be able to either go to a Congressman's office, or send an email, and for all sorts of reasons people sometimes are able to get involved in that realm.
I can totally understand, because being a "voice", being assertive, putting your heart and soul on the line to speak with a member of the House or the Senate, or to ask for money for research and development for those who are researchers and may have the golden key some day to unlock and unleash something powerful enough to STOP the pain and suffering of RA, Lupus, Sjogren's, Osteoarthritis, MS, FM, CFS, MCTD, and the other host of autoimmune illnesses, or Lyme Disease, Cat Scratch disease that now has entered as a possible "means" by which some of us "got" these illnesses .... whether that is true or not, we need the people, researchers, money. the backers with funds, the corporations and foundations... the CDC... gosh the list is endless.... but we also need YOU and MYSELF. We MUST put our voices out there... if they "squash" us and tell us to get out, then so be it.... There will be yet another person that may not dismiss our "calling" and is willing to watch, look, and listen...
I have been contacting my Senators and Representative (Federally) to invite them to an "Arthritis 101" meeting in DC the first week in December. Some of these folks are new to Congress, and we desperately need to "inform" them of just how important our medications, such as biologics, our not being delayed in getting a diagnosis, of getting treatment, and how critical it is for all patients with these illnesses have a fair chance to try and either go into remission, face less flares, not have to wake up every morning of your life, with stiffness, miserable fatigue, pain, and yet another day's fight to see who will when in the end... Will the "illness" take over all our spoon and then some, or will WE remain victor that day, and have spoons left over for the next day.
Life is so very, very, very SHORT!!! Many of us by the time we are about 25 years old, begin to realize that "forever" is not all that long... the 10 years, 15 years, 30 years... it all goes by too fast. We go from completely helpless as an infant, turn around and we are crawling, walking, and running. Turn around again, and we are driving a car, dating, and in college... one more turn and we are parents, raising our kids, and in the next turn they are grown, with kids of their own, and we have been out of high school for decades. You then begin to see "classmates" that are in the obituaries, or their parents are. We see the grey hair where the dark brown, blonde and red was. The wrinkles seem to come on over night. And within a "breath's space". we are as our parents were, feeble, not able to do, go, visit, travel and see the world through those young eyes. Our sight is blurry, our steps softer, and maybe not so sure, and you may even find yourself fighting with illnesses and what they cause, things you never would have dreamed they would happen just a few short years ago.
I know I've thought back just 7 years ago. Never would I have dreamed I would lose all of my teeth, and need complete dentures. I didn't know I would have all of these implanted joints, many more that are deteriorating quickly, and may need a new implanted one also. Life has just gone by within the vast light and the vast dark, I stood in the gray in between and never gave a thought that I could not wear that pleather mini skirt, or my pleather pants again. I thought I would be in those 6 inch platform heels for many years to come. Little did I know that none of those would be true. That now I try to find shoes that are "pretty", yet they have to be half way comfortable. I can no longer wear some of those mini skirts, and tight tops... and I would never have expected to have a huge bulge our of my right side, where I have an implanted pain pump. I never would have thought I would awaken to stiffness, pain, and sometimes so fatigued I just can't really do all I want to in a day. I find myself wandering through my own home, through my lists and lists, and wondering how I will do the laundry, vacuum, cook, clean, wash the car, change the sheets, get myself showered, get the pups fed, watered and taken care of, help my Mom with her things, and still need more time to do more things. I have a very difficult time "giving up" anything. Even though, just like here on my blog, or in my new book, I am writing, I HAVE NO CHOICE, I HAVE TO FOR GO something in order to have the time, the stamina, the brain power, to do what I NEED to do and what I WANT to do... and something will have to be put aside. If I had my way, it would be like it was in the late 90's. I could go to college full time at night, write, work full time, take care of the kids, house, yard, bills, cleaning, cooking, sewing, going out on the weekends, studying, and I just never stopped. I had the energy of an atom I guess.... I was a never ending ball of go, go, go, and that included exercising EVERY DAY, walking, go to aerobics, you name it... now if I get the laundry done, have enough time and energy to shower, you can bet before I can finish ONE task, I am exhausted and ready for the sofa instead.... and IT SUCKS...
Some of you may wonder why I get "caught up" in all of this. Well, for one thing I take my "advocacy", "Activism", my "Volunteering", my writing, blogging, and being An Ambassador, as well as a "general spokesperson" for those with illnesses, chronic in nature, those that we know will NEVER go away more than likely in our lifetimes, and so my dream is to "build a bridge" to future generations where they WILL have answers, as to why, what, how, when, where... and possibly a way to just say NO, to some horrid, chronically painful, life shattering chronic pain and illnesses. So, whether I am writing a blog post, or posting something in Facebook, or reading someone posts... whether I am "helping" a group, or Foundation... whether I am trying to help several causes and Foundations by "lending my voice and own personal experiences to them, in order to get OUR POINTS across to Congress, to the nation, to our own communities, even to our family and friends, when I am doing any and all of that, then I am serious about my "job". I don't take being an advocate for others lightly. I take it as I am trying my very best to try those out there, that either can't step forward, due to family, illness, lack of funds, or any number of reasons some people can't "lend a volunteering hand". There are those that are "shy", or they are raising families, or they are just too ill, to be able to either go to a Congressman's office, or send an email, and for all sorts of reasons people sometimes are able to get involved in that realm.
I can totally understand, because being a "voice", being assertive, putting your heart and soul on the line to speak with a member of the House or the Senate, or to ask for money for research and development for those who are researchers and may have the golden key some day to unlock and unleash something powerful enough to STOP the pain and suffering of RA, Lupus, Sjogren's, Osteoarthritis, MS, FM, CFS, MCTD, and the other host of autoimmune illnesses, or Lyme Disease, Cat Scratch disease that now has entered as a possible "means" by which some of us "got" these illnesses .... whether that is true or not, we need the people, researchers, money. the backers with funds, the corporations and foundations... the CDC... gosh the list is endless.... but we also need YOU and MYSELF. We MUST put our voices out there... if they "squash" us and tell us to get out, then so be it.... There will be yet another person that may not dismiss our "calling" and is willing to watch, look, and listen...
I have been contacting my Senators and Representative (Federally) to invite them to an "Arthritis 101" meeting in DC the first week in December. Some of these folks are new to Congress, and we desperately need to "inform" them of just how important our medications, such as biologics, our not being delayed in getting a diagnosis, of getting treatment, and how critical it is for all patients with these illnesses have a fair chance to try and either go into remission, face less flares, not have to wake up every morning of your life, with stiffness, miserable fatigue, pain, and yet another day's fight to see who will when in the end... Will the "illness" take over all our spoon and then some, or will WE remain victor that day, and have spoons left over for the next day.
Life is so very, very, very SHORT!!! Many of us by the time we are about 25 years old, begin to realize that "forever" is not all that long... the 10 years, 15 years, 30 years... it all goes by too fast. We go from completely helpless as an infant, turn around and we are crawling, walking, and running. Turn around again, and we are driving a car, dating, and in college... one more turn and we are parents, raising our kids, and in the next turn they are grown, with kids of their own, and we have been out of high school for decades. You then begin to see "classmates" that are in the obituaries, or their parents are. We see the grey hair where the dark brown, blonde and red was. The wrinkles seem to come on over night. And within a "breath's space". we are as our parents were, feeble, not able to do, go, visit, travel and see the world through those young eyes. Our sight is blurry, our steps softer, and maybe not so sure, and you may even find yourself fighting with illnesses and what they cause, things you never would have dreamed they would happen just a few short years ago.
I know I've thought back just 7 years ago. Never would I have dreamed I would lose all of my teeth, and need complete dentures. I didn't know I would have all of these implanted joints, many more that are deteriorating quickly, and may need a new implanted one also. Life has just gone by within the vast light and the vast dark, I stood in the gray in between and never gave a thought that I could not wear that pleather mini skirt, or my pleather pants again. I thought I would be in those 6 inch platform heels for many years to come. Little did I know that none of those would be true. That now I try to find shoes that are "pretty", yet they have to be half way comfortable. I can no longer wear some of those mini skirts, and tight tops... and I would never have expected to have a huge bulge our of my right side, where I have an implanted pain pump. I never would have thought I would awaken to stiffness, pain, and sometimes so fatigued I just can't really do all I want to in a day. I find myself wandering through my own home, through my lists and lists, and wondering how I will do the laundry, vacuum, cook, clean, wash the car, change the sheets, get myself showered, get the pups fed, watered and taken care of, help my Mom with her things, and still need more time to do more things. I have a very difficult time "giving up" anything. Even though, just like here on my blog, or in my new book, I am writing, I HAVE NO CHOICE, I HAVE TO FOR GO something in order to have the time, the stamina, the brain power, to do what I NEED to do and what I WANT to do... and something will have to be put aside. If I had my way, it would be like it was in the late 90's. I could go to college full time at night, write, work full time, take care of the kids, house, yard, bills, cleaning, cooking, sewing, going out on the weekends, studying, and I just never stopped. I had the energy of an atom I guess.... I was a never ending ball of go, go, go, and that included exercising EVERY DAY, walking, go to aerobics, you name it... now if I get the laundry done, have enough time and energy to shower, you can bet before I can finish ONE task, I am exhausted and ready for the sofa instead.... and IT SUCKS...
TO BE CONTINUED
Friday, January 31, 2014
Trying to Place "priorities" in the right spot! Difficult to do when you suffer a Chronic Illness
I just said that I was going to go "rest" and watch a movie with my dogs. After all, I am just barely a week out of "major surgery", even though laparoscopic, nonetheless, major anyway, as my Surgeon, Dr. Sullivan reminded me yesterday. I went in for my week recheck, knowing he would turn me loose to ride my exercise bike... Well, his answer was an emphatic NO! NOT for 6 WEEKS!
I gave him a bit of an evil look, and he began to tell me... okay ride that bike, incumbent or not, and when you come back, and those "mesh" panels have pulled away, the next surgery will be big incisions, and not pleasant at all. So, of course to the best of my ability, I am abiding by doctors rules... so today at least although windy as hell, warm enough that I made my 30 minute or so jaunt around our long driveway. So, I did get some exercise in. :)
And I realize he is right... if I did something stupid, and pulled what he has done loose, then the repair of that would be a much more difficult surgery, that would probably mean a hospital stay. I still can't fathom riding that stupid bike would hurt, but okay, I will behave for now.
I am still sore, still purple from my navel, all the way down to my thighs... yes EVERY PIECE of me, is "purple". I won't give the "details" but you can get the jest of it all, since the hernia's are right at the pubic bone, and blood travels downward, when healing begins, thus due to gravity, several "parts" on me that are not usually purple sure are now.
I had to laugh when I was telling him. He basically just came right out and said it, and I sat giggling and agreed ALL of me was bruised and purple!
I am just so disgusted with everything right now, I won't even begin to get into all that has happened in just a few short days... but I will say between the ignorant people at my insurance company, and the stupidity of the "billers" at the hospital where I have my infusions, along with (if I get another automated stupid Call from Humana I am going to scream)!!! I want to say to that recording, QUIT spending MONEY on these stupid calls and pay my damned bills! Of course they see "coding" is wrong, but rather than question it, they just pay it wrong or right... and even if they "underpay" or believe me I had them overpay a year ago or so, and called to tell them they paid for blood and lab work that DID NOT belong to me... 4,000.00 worth! And honestly, I don't think they cared... But they sure as heck care when "their" premiums aren't paid..
I spent most of my walk in deep thought today. In fact my husband said I looked almost upset... but not really at all. I am more in this place that I have to "split" my time. I desperately have to go allow myself to work on my book, and post more of my "own" stuff here on my blog. Not that what I am doing is not awesome, because it is. But, more along the lines of I HAVE to for my OWN SANITY get back to writing my book. No more of this waxing and waning... or feeling fearful... it is time to put that "foot" in the door, and go for it.
So, that is where my thoughts have been this afternoon.
Actually this morning, I just about have the "mini-manual" and all of the "Hubs" and sites set up with the correct permissions and so forth. I just hope they will be able to decipher my manual.
But, I HAVE GOT TO ORGANIZE and split my time up between my advocacy and my own blog and book. I have been so far out on a limb, with all of my new responsibilities with all of the Advocacy and Volunteer work (which I am THRILLED to do), but in between all of that, I've kind of lost my own "path" up the mountain to get my book written and published. Along with not overwhelming my blog, and FB page with too much of one thing, yet not nearly enough of "me"... which is why I do this... for YOU and for ME... so I have got to stick Rhia back into the picture as of exactly who I am, and not lose all contact of what my very real goal is... to write that book, and to have the very best blog I can.
While I walked... I talked... to myself. I have been faced with "one" reason as to why I won't start the first chapter... and "fear" is the only thing I can come up with is "Fear".... not sure what kind of fear, or what I am frightened of... but it seems fear holds me back from putting my eyes on the goal, and putting my fingers on these keys. As Natalie Goldberg says, WRITE...Write Daily... even if you fill notebooks full of crap, write it anyway.... and in my heart of hearts, I know that....
So, if I seem a bit "pre-occupied", or a bit distant over the next few weeks, I am in the process of mentally sorting out all of this. I want so badly to get that book written I can almost taste it. So, as Tiffany said today in a post on Facebook. I have got to put one foot down and the next one in front of it, or it shall not write itself....
I think right now must be a very difficult time of the year for many of it seems.... each person I come in contact with, is having hell on some level....
May be would should have named this Hell 2014!!!!
I gave him a bit of an evil look, and he began to tell me... okay ride that bike, incumbent or not, and when you come back, and those "mesh" panels have pulled away, the next surgery will be big incisions, and not pleasant at all. So, of course to the best of my ability, I am abiding by doctors rules... so today at least although windy as hell, warm enough that I made my 30 minute or so jaunt around our long driveway. So, I did get some exercise in. :)
And I realize he is right... if I did something stupid, and pulled what he has done loose, then the repair of that would be a much more difficult surgery, that would probably mean a hospital stay. I still can't fathom riding that stupid bike would hurt, but okay, I will behave for now.
I am still sore, still purple from my navel, all the way down to my thighs... yes EVERY PIECE of me, is "purple". I won't give the "details" but you can get the jest of it all, since the hernia's are right at the pubic bone, and blood travels downward, when healing begins, thus due to gravity, several "parts" on me that are not usually purple sure are now.
I had to laugh when I was telling him. He basically just came right out and said it, and I sat giggling and agreed ALL of me was bruised and purple!
I am just so disgusted with everything right now, I won't even begin to get into all that has happened in just a few short days... but I will say between the ignorant people at my insurance company, and the stupidity of the "billers" at the hospital where I have my infusions, along with (if I get another automated stupid Call from Humana I am going to scream)!!! I want to say to that recording, QUIT spending MONEY on these stupid calls and pay my damned bills! Of course they see "coding" is wrong, but rather than question it, they just pay it wrong or right... and even if they "underpay" or believe me I had them overpay a year ago or so, and called to tell them they paid for blood and lab work that DID NOT belong to me... 4,000.00 worth! And honestly, I don't think they cared... But they sure as heck care when "their" premiums aren't paid..
I spent most of my walk in deep thought today. In fact my husband said I looked almost upset... but not really at all. I am more in this place that I have to "split" my time. I desperately have to go allow myself to work on my book, and post more of my "own" stuff here on my blog. Not that what I am doing is not awesome, because it is. But, more along the lines of I HAVE to for my OWN SANITY get back to writing my book. No more of this waxing and waning... or feeling fearful... it is time to put that "foot" in the door, and go for it.
So, that is where my thoughts have been this afternoon.
Actually this morning, I just about have the "mini-manual" and all of the "Hubs" and sites set up with the correct permissions and so forth. I just hope they will be able to decipher my manual.
But, I HAVE GOT TO ORGANIZE and split my time up between my advocacy and my own blog and book. I have been so far out on a limb, with all of my new responsibilities with all of the Advocacy and Volunteer work (which I am THRILLED to do), but in between all of that, I've kind of lost my own "path" up the mountain to get my book written and published. Along with not overwhelming my blog, and FB page with too much of one thing, yet not nearly enough of "me"... which is why I do this... for YOU and for ME... so I have got to stick Rhia back into the picture as of exactly who I am, and not lose all contact of what my very real goal is... to write that book, and to have the very best blog I can.
While I walked... I talked... to myself. I have been faced with "one" reason as to why I won't start the first chapter... and "fear" is the only thing I can come up with is "Fear".... not sure what kind of fear, or what I am frightened of... but it seems fear holds me back from putting my eyes on the goal, and putting my fingers on these keys. As Natalie Goldberg says, WRITE...Write Daily... even if you fill notebooks full of crap, write it anyway.... and in my heart of hearts, I know that....
So, if I seem a bit "pre-occupied", or a bit distant over the next few weeks, I am in the process of mentally sorting out all of this. I want so badly to get that book written I can almost taste it. So, as Tiffany said today in a post on Facebook. I have got to put one foot down and the next one in front of it, or it shall not write itself....
I think right now must be a very difficult time of the year for many of it seems.... each person I come in contact with, is having hell on some level....
May be would should have named this Hell 2014!!!!
Thursday, January 23, 2014
A Bit Out of Commission - Surgery and home recuperating
Hi All,
After double hernia surgeries yesterday, I am home, a bit in pain, and sore, and up and down, trying to recuperate. :)
I appreciate all of the well wishes and prayers... and bear with me as I shall be hopefully more up and around in about 2 or 3 days.
I have huge plans for my blog, and for helping with the Systemically Connected Blog for the IFAA!!! I am so looking forward to helping Lorna!
I also loved the "Blog Leaders" and all of the interviews we had last week! That was so much fun! I am getting each of you up on my "blog list" here. I have some already, and as soon as I am a bit more able to sit and think ( I am a bit still foggy from the anesthesia.... I will get everyone's listed!!!
I look forward to Kirsten and I getting to meet in D.C.!!! I got my flight booked and my room booked! Now just figuring out how to take my entire closet!!!! LOL!!!
More to come... please keep comments coming... I would LOVE to know what YOU want to see....:) Rhia
After double hernia surgeries yesterday, I am home, a bit in pain, and sore, and up and down, trying to recuperate. :)
I appreciate all of the well wishes and prayers... and bear with me as I shall be hopefully more up and around in about 2 or 3 days.
I have huge plans for my blog, and for helping with the Systemically Connected Blog for the IFAA!!! I am so looking forward to helping Lorna!
I also loved the "Blog Leaders" and all of the interviews we had last week! That was so much fun! I am getting each of you up on my "blog list" here. I have some already, and as soon as I am a bit more able to sit and think ( I am a bit still foggy from the anesthesia.... I will get everyone's listed!!!
I look forward to Kirsten and I getting to meet in D.C.!!! I got my flight booked and my room booked! Now just figuring out how to take my entire closet!!!! LOL!!!
More to come... please keep comments coming... I would LOVE to know what YOU want to see....:) Rhia
Friday, November 22, 2013
Technology - In Every Way & the Miraculous Way the Medical World Uses It
Man Kind, Medicine, and Technology...
To Start Off with a bit of an update of my turmoil the past couple of days and a walk through how technology is revolutionizing our Medical World... Well my new I-Mac is on it's way. I decided to forego the Macbook Pro or Macbook Air(as cool as they are), even though I really wanted a laptop. But, I got to thinking about it, and I have my I-Pad! It works as well as a laptop, and is lighter and smaller to carry around. So, even if I were to travel, that would suit my needs, or our needs if Jim goes and needs to be able to watch the client's and their servers. So, I have a 22 inch I-Mac that I wished the heck would hurry up and get here. I was so totally bummed out yesterday. I had been trying to work on my old laptop, along with an external monitor like I did before. This is a I-Book G4, that was bought about 2004 or so, for me. When I was doing web design work, and helping with the business, I needed a new computer and they bought this for me. It only has a 13 inch screen and thus the eternal monitor works to have a larger amount of "real estate" to work on. But, at that time this was one of the faster on the market! In fact Jim and his partner at the time, Mark was almost jealous because mine was faster than theirs. :) But, you don't realize how quickly technology changes until you have to step back "in time" to a computer that is even 7 years old. I know my I-Mac that got zapped two days ago, will seem like it was as slow as a snail compared to my new one on the way. but, being on this laptop has made me appreciate that technology has made so many advances in a time when all kinds of things are happening at a lightening pace. If I think back just a few years ago, I recall no cell phones. In fact the first one I had with the big "bag phone" by AT and T. Man and the "minutes" were expensive. When you think about technology and the medical world, wow, how many things have changed dramatically in a very short period of time. In my lifetime, I've watched knee surgery go from a very huge scar left from the surgery, traction and staying in the hospital for seven days, to arthroscopic surgery, with three tiny little scars and going home the same day after being operated on. Even our MRI, CT, PET scans, mammograms, bone density tests and just take a "run" through in your mind of all of these amazing types of tests that have only been here a short period of time. When I was about 20, I recall have to have a "brain scan". I was taken into the hospital, upstairs at our old hospital here in my home town, before they built our new facility, to a room where this huge machine took a very long time to "scan" my head. It seemed like hours I had to lay there very still, and I recall the imagines, and thinking then just how "out of this world" that seemed. Well in these times, we have advance so far in those realms, that our scans now days can show minute changes in skin, in organs, in our spines, joints, all of our bodies, and do so instantly. Even X-rays. There is no wait in knowing the outcome of an X-ray. Yo know the results usually before you even walk out into the world again. Advances in lab work, in equipment in our Emergency Rooms (save more lives than ever due to the amazing technology), having things like "Care Flight" available, nurses and doctors having better educations, better skills, using computers now for everything from our medical records (enabling doctors to immediately share a patients medical information), to telemetry. We can have kidney stones literally "blasted" to pieces rather than having to undergo being literally "cut almost have in two" as it was not long ago, when my uncle had stones several times. The old fashioned "basket" would not collect them, thus opening up the body was the only way to get them. Surgeries of all types and those changes. Just recently the "De Vinci" surgical computerized system has been introduced. That computer can almost do the surgery in itself. It helps physicians be able to do detailed procedures that once were impossible to do without cutting the body open and exposing the areas that need to be operated on. From pace makers, to internal pain pumps and stimulators. From "open" heart split your breast bone and wire you back to close that incision up to going through a tub inserted into the major groin artery along with a tiny camera saves hundreds of thousands of the once open heart surgeries that were once not long ago a necessity for any type of heart ailment just about. In the complicated world of "autoimmune illnesses" the advancement of tests, medications, and the knowledge now out there has grown by leaps and bounds. I realize that all of us, as patients, feel and know there is NO MUCH MORE work to do about these illnesses and the devastation and have the reek u[on every aspect of our bodies, the physical, our minds, the mental, and the emotional costs are still extremely high. Advancement just in the communication about these illnesses needs to be ramped up by a huge percentage. With early, and I mean extremely early ways to find evidence of these illnesses, we could not only slow down, or put them into remission but actually STOP these horrid illnesses before they ever have a chance to cause any type of damage. Again we have advanced in a huge way comparatively to just a few years ago. The ability to have researchers all around be able to collaborate data from clinical trials. The clinical trials that can now test new advances in medications, that just a few years ago did not dream of having the majority of them or the use of many medications we do have and them being able to be used to treat autoimmune arthritic diseases is saving lives each day. Having "Lupus" even when I was about 35 years old, first of all was a "death sentence basically. LIttle was known about the disease or what it did throughout the body. But, it was known that is was as serious as cancer, if not more. Don't get me wrong, these autoimmune diseases can still be "deadly" and are just as serious, if not more today. But, the difference is the way we are beginning to have so much more knowledge, more doctors that are studying these puzzling illnesses. With our vast changes in the way the world communicates often with the click of a "mouse", moves information to all the world, that once had to be shared by "snail" mail, or written in an article, yet the magazine article may not be seen for a month or more. Now, as soon as the news is out, more often than not, we know all about it via the internet. We are living more years as a whole now. That average age of people has risen dramatically. So, that means not only have we made many advances in all walks of life, but we also have to continue to move forward flowing down that river of human compassion, understanding and knowledge all over the world. WE are no longer just a "nation". We are no longer separated by oceans of water, for we are a united world, that in the blink of an eye, you can be speaking to someone overseas with a few key strokes, the touch of a phone number, or even see one another and speak over the internet on a messenger. Next time you are on Facebook making a post to "friends". Think about where those "friends" are. Whether in another town, another state, or another country, instantaneously you are "speaking" to them, with no "lag time". Each day our world becomes closer together. Each day we should never take that for granted, for it as mind boggling as it is, we even reached to out other planets, to find somewhere out there in the endless vastness of space to find if "life" exists there, and how that may sustain us someday.
Thursday, October 7, 2010
Extremely Important to take Action - Pain Medications & FDA Meeting on October 8th
http://www.painfoundation.org/take-action/natl-efforts/rems/
This is EXTREMELY IMPORTANT! The meeting about Pain Medication and A Chronic Pain Patient Bill of Rights will be put through the FDA on October 8th! All of our letters need to go into them before this important meeting. The URL will take you to the American Pain Foundation page that tells you exactly what steps to take. All of us patients, family, spouses, caretakers, doctors, and all please take time to you your letters in. :)
This is EXTREMELY IMPORTANT! The meeting about Pain Medication and A Chronic Pain Patient Bill of Rights will be put through the FDA on October 8th! All of our letters need to go into them before this important meeting. The URL will take you to the American Pain Foundation page that tells you exactly what steps to take. All of us patients, family, spouses, caretakers, doctors, and all please take time to you your letters in. :)
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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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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... -
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...