http://www.lupus.org/webmodules/webarticlesnet/templates/new_magazineback.aspx?articleid=3011&zoneid=67&utm_source=Newsletter+8-6-13&utm_campaign=Newsletter+8-6&utm_medium=email
The link above is about "cognitive issues" when it comes to Lupus and learning to cope with them... thought this was a great article, and may help to explain all of the "brain fog" and so forth we endure....
"Through my heart's work of writing, I share with you my complex journey a top the mountain, sliding down, crawling up, & living through the realms of Autoimmune Arthritic Illnesses. Taming "The Wolf" Thru each Day... One Step at a Time … Together We Are Learning to Survive. Please follow along, to New Beginnings - looking Thru the Window Pane of Pain in life where we shall find our journey leading us to - New Perspectives
Friday, August 9, 2013
Wednesday, August 7, 2013
Medicare Advantage Plans, Medicare, The Government, SCREWING THE SICK PEOPLE OVER!
I
CANNOT even begin to say just how UPSET, READY TO THROW IN THE TOWEL,
FORGET ALL OF THIS CRAP ENTIRE MESS!!! I THOUGHT I had REACHED MY LIMIT
last week, but YESTERDAY TAKES THE CAKE FOR ME!!!! My Pain specialist
feels I NEED a Epidural Steroid Injection. He thinks we MAY see me get
RELIEF from this INTRACTABLE PAIN I have been in again for for more
WEEKS!!!! So, I go in last Friday for the "formality"
of an office visit so he can get the "approval" through Humana for the
procedure. Well, I had not heard by yesterday and I knew he wanted to do
this injection ASAP, which means FRIDAY this week when he does his
procedures! I call them, and the woman that does all of that said they
"submitted" the forms, and are talking back and forth to Humana about
this. So, in other words, sounds like my doctors office is doing their
job. But, since that have not gotten AN APPROVAL, I told her I WOULD
CALL also to see if I could help rush things up a little. If I don't get
it approved by TODAY (Wed.) then I won't be put on the schedule and
will have to wait until a WEEK FROM FRIDAY to be in pain!!!! So I call
Humana. I get the same old run a round, sent her, sent there, need to
talk to "prior" authorizations, which is where I was supposed to be
anyway. I get another woman in "Prior" Authorizations, that tells me,
well, I need to send you over to our "Pain Prior Authorization 3RD PARTY
UNIT!!!) Now I am trying in my mind to decide what the hell that is! I
knew Humana had done some things with "pain management" but SUPPOSEDLY
TO HELP PATIENTS! BULL SHI^%!! I get there, not knowing "who" I am
talking to. And some snot nosed girl, who had not a compassionate bone
in her body tells me, "Well, your authorization was received last
Friday. Okay and.... WE "denied" it yesterday"!!!! WHAT! My doctor said
nothing!!! THEN I ASK WHY??!!! By this time I am almost hysterical. I am
standing here in more pain than I can even describe. I just got through
with a dental appt I could NOT afford and I still am so hoarse I can
barely speak, and trying to get well enough to even go to the dentist
and have the injection, and here this woman is telling me THIS....
"Well, YOU have an IMPLANTED PAIN PUMP, thus YOU DO NOT NEED INJECTIONS
for PAIN! YOU HAVE PAIN CONTROL!!! Now, by this time, I am ready to
throw the phone across the room, I am so hoarse I cannot utter ONE word
to this insanity, and then she begins her "speech" about APPEAL!!! HELL
APPEAL??? I DO NOT HAVE WEEKS!!! to get these INJECTIONS! And what the
hell does me having a pain pump due with my back possibly having
compressed nerves and inflammation, bone spurs etc in it??? So, JUST AS I
SAID THIS PAST WEEK, NOW it is where it it a POLITICAL GAME with
PATIENTS LIVES! I finally did enough research to find this "3RD PARTY"
that does Humana's "pain management". They are ORTHO-NET!!! BELIEVE ME
HUMANA had that information BURIED!!! I had to do some digging to find
all of this out, but they have some "outside" agency, that is nothing
but a bunch of "pencil" pushers, how have NO CLUE and DO NOT CARE ABOUT
WHETHER I DIE OR LIVE!!! That is the truth! These people are getting
Humana A DOLLAR OR TWO "SAVED", yes saved all right, while WE AS
PATIENTS have to SUFFER THROUGH THEIR PENNY PINCHING GREED!! THIS is
also part of 'OBAMA CARE"!!! THIS is WHY I was saying about the
PETITION, WE HAVE GOT TO STOP THIS AT CONGRESS!!! Between all of the
bickering and sitting and DOING NOTHING! THEY HAVE SCREWED US FOR
SURE!!! I cannot say just how upset I am! As you can see I only slept
about 3 hours and there is no way I can CONTINUE TO LIVE LIKE THIS!!! My
"pain pump" is NOT for ACUTE pain, or NEW PAIN like a compression
fracture. It is like denying to give you blood pressure medication one
day since your blood pressure seems to look normal. Or telling a
diabetic, well right now your blood sugar is good, so you do NOT need
insulin!!! Or saying, okay well, you only have 2 gallstones, so YOU can
HANG on until there are more!! I know it sounds insane, but THINK OF ALL
THE WAYS this EFFECTS NOT JUST ME BUT YOU!!! I AM BEYOND the place of
GIVING UP!!! I am way PAST THE TEARS, THE BEING PISSED, ETC.... I am
just going to sit on my sofa, AND WITHER AWAY IN PAIN...NO MORE... I
CANNOT TAKE NOT ONE MORE DAY OR ONE MORE PERSON WHO DOES NOT KNOW ME,
telling me oh, you are all right you have a "pain pump"... I have had
it.... THEY HAVE WON!!!!
THIS is MY LETTER below to the President, the Senate, the House, The Head over Human Services, and anyone else that will read, including the Humana insurance bunch.
Well as someone who has suffered way more than I should ever have to, I am here to say, that any more "cuts", any more "changes to codes" or more "prior authorizations, or NOT paying the GOOD DOCTORS, so they STOP SEEING MEDICARE PATIENTS (ie especially MEDICARE ADVANTAGE PAYMENTS), will have the entire NATION SEEING PEOPLE IN THE STREETS, writhing in pain, and ready to just say FINE WE GIVE UP! Forget OUR "quality" of life! Forget YOUR CITIZENS being ABLE TO LIVE NORMAL LIVES! This is bringing our doctors and us as patients to OUR KNEES, taking away WHAT IS LIFE SAVING for MANY OF US! I have endured MORE PAIN in my life than ANYONE should have to! I have chronic illnesses that CAUSE PAIN! Lupus, Rheumatoid Arthritis, Degenerative Joint and DISC disease, 2, yes TWO Heart attacks (one due to pain possibly), Multiple Joint REPLACEMENTS, Kidney stones, migraines, Peripheral Neuropathy, Osteoporosis (which is SEVERE) and possibly causing my spine in places to have compression fractures, CHRONIC DOUBLE vision, tarsus tunnel, both of my THUMBS are WORN and Degenerated so badly they need replacement, like I ALREADY have in both KNEES and a RIGHT SHOULDER, now developing HIP pain, Lower back pain, stiffness, swelling, and my CERVICAL SPINE just had 4 LEVEL REPLACEMENT because it was so badly degenerated. ! I could GO ON! There is more. To Think, about 10 YEARS AGO, I was "NORMAL, working Mom, Wife and Daughter. I have had health issues ALL my LIFE, but when the LUPUS AND RA decided to "knock on my Door", MY ENTIRE LIFE changed overnight! I went from working, to have to completely stop. All of the heart issues, the joint issues, the ongoing migraines, and all of the "symptoms" that were going along due to "Lupus and RA" were taking their toll. I did NOT get DIAGNOSED until 10 YEARS ago with WHY my body was falling apart! I had my FIRST HEART ATTACK at the AGE 40! AND I am an avid exerciser daily, I eat extremely healthy, I watch every pound, I am the weight I am supposed to be, I Do NOT drink, I do not party, I DO NOT do any of the things that would be a factor in my "health problems". I was a 5 MILE A DAY WALKER, for years and years! I rarely eat "beef, pork, etc", and eat salads, veggies, fruits, fish, chicken, and stay away from fat, carbs, and high calories. So, thus the surprise when I woke up alone 20 miles away from any hospital or even ambulance for that matter, and DROVE MYSELF to the ER that morning! Good thing I did! That was only about 6 weeks before the day I turned 41!!!! As I began to have more and more pain, stiffness, fatigue, unexplained joint issues that called for surgery, blood abnormalities, more and more PAIN, that even was so bad, my doctor had to IMPLANT A PAIN PUMP so I can have enough relief. There is NO WAY to control MY pain without it! IT is totally intractable! But, this PUMP does NOT RID ME of ALL PAIN! If something "breaks", like a hip deteriorate, or I have a compression fracture of the spine due to the osteoporosis, the "Pump" does NOT completely relief that type of pain. In fact it is NOT relief but SOME of the pain! It gives ME BACK, a TOLERABLE LEVEL so I can have some QUALITY OF LIFE! WITHOUT IT, or with more ACUTE PAIN, then I am completely WITHOUT an NORMAL LIFE! I would be confined to a bed or sofa, and not be able to to anything, but probably scream in INTRACTABLE PAIN! There are reasons for pain, that even our doctors DO NOT KNOW YET! So, now you have a little background of just me, and I see hundreds, thousands, like me that have the same issues, some even worse than myself! They are dealing with exactly what I am. My "Medicare Advantage Plan" HAD been OKAY! UNTIL JANUARY 1ST 2014!!! When the “government” decided to take MEDICARE, then PICK AND CHOOSE, some of the CHANGES from "Obamacare", it totally put US on the WRONG SIDE of the table! Since January 1, 2013, I have FOUGHT to get every CLAIM PAID, due to this "NEW SYSTEM" that costs thousands of dollars at the doctors and hospitals. It is such a MESS, EVERY claim myself or my Mom (she is 80 and bless her heart, she takes care of me rather than how it should be ME helping HER!) I have to FIGHT the doctors, the hospitals, the entire medical scene, along with my MEDICARE ADVANTAGE PLAN! I have DOCTORS telling me I had better FIND SOMEONE ELSE, because THEY ARE GOING TO QUIT TAKING these PLANS and that they may not be able to even AFFORD TO SEE MEDICARE patients NEXT YEAR (2014)!!! These are experienced, well trained, incredible physicians that have "HELD" my body together, with their care! If If were no for them, I probably would NOT be here today. I almost died in 2010! Due to the Lupus and many complications, along with my 2ND HEART ATTACK while in the HOSPITAL, I almost died! Now (as of (July/August 2013) I NEED a special EPIDURAL LUMBAR INJECTION in my spine! I have once again ACUTELY began to have INTRACTABLE PAIN in my LOWER BACK, MY HIPS down into both FEET!!! It feels like someone is pouring HOT LAVA right DOWN my INNER BONES in both legs, from just above my HIPS down to the BOTTOMS of my FEET! I have been "ENDURING" this for WEEKS, and the doctors are doing all they can to FIND the problem and FIX IT! NO PAIN PUMP will STOP ACUTE PAIN or pain from something "broken" that needs to be repaired! IT is for chronic, long term pain. But it will NOT get rid of acute swelling, a compressed nerve, a worn out joint, and so forth! LAST WEEK, my Pain Specialist Physician (who already has the CT, the EMG the NCS) and "tests' to show nerve issues, damage and deterioration to my lumbar spine in which I NEED an INJECTION to first of all SEE IF it WILL HELP with swelling, inflammation and pain! Plus it can tell HIM MORE about what HE needs to do, to FIX THE PROBLEM! His staff as always send the proper RED TAPE PAPERWORK, into my (Medicare Advantage Plan for “APPROVAL”. Well, they DENIED the AUTHORIZATION!!! How CRAZY is that!!! NOW due to all the CHANGES I in these ADVANTAGE plans and MEDICARE, my MAP went to a "3RD PARTY" who does THEIR PAIN PAPERWORK! Which by the way NO ONE told myself or anyone I know about this "change" in how our claims are processed! So, this "3rd party" said "DUE to me having a PAIN PUMP" implanted”I did NOT NEED the INJECTIONS!!! That is total insanity! Who is there, working on pain patients authorizations and claims??? They are KNOW NOTHING about PAIN MANAGEMENT. IF they did, then they would KNOW ONE does NOT have A THING TO DO with the other!!!??? Just because I have a "pain medication pump" doe NOT mean it will just TAKE EVERY PAIN AWAY! If my hip, back, thumbs, feet, are 'damaged" and "worn" that type of pain has to be "fixed" in order for relief! If a NERVE is COMPRESSED, NO AMOUNT of PAIN medication will "release" and relieve pain from that NERVE!! That is like telling a diabetic, well your blood sugar is good today, we are NOT giving you any INSULIN!!! OR someone has a CAVITY and it is in the NERVE, and telling them WELL the PAIN PUMP will HANDLE IT, so we can't do anything but let you KEEP THE TOOTH! I APOLOGIZE for all of the “Capitalization!” I just cannot even find the words to describe what I am enduring now. You are NOT AWARE of the PAST 5 WEEKS of what I have and still am ENDURING!! I am in CONSTANT, INTRACTABLE PAIN! I have NO QUALITY OF LIFE! I CANNOT enjoy my Summer, my yard, I cannot clean my home, cook, or go to the store by myself. I cannot even go to my doctors myself, my husband has to totally take care of me! I barely move off the sofa for the most part, because due to pain, stiffness, swelling and NOW I have a SEVERE LUPUS FLARE and also the RA is acting up, that the fatigue, the face rash, all of the horrible symptoms of Lupus are here due to me having to endure so much pain. I cannot SLEEP, I cannot sit long, stand long, walk long... My life has TOTALLY been TAKEN OVER due to possible more damage in my LUMBAR SPINE, HIPS, THUMBS AND FEET DUE TO the Lupus and RA!!! Some of those things may have to be “fixed”, for that type of PAIN to be relieved! THIS is not ONLY EFFECTING me! IT it taking its TOLL on my SPOUSE, my MOM (who I am supposed to be helping out), my 2 children, and all of those that love and care for me. They are worried out of their minds! My husband is having to try and "juggle" everything I can't do now within his own work as a Web Developer, Designer, Database consultant and so forth, so his clients are taken care of, while HE ALSO TRIES to take care of ME! I know beyond a shadow of a doubt I am NOT the ONLY one out there. I see it day after day, week after week, those like myself that are having the exact same issues, if not worse than myself! While you sit in Washington, rather than "taking care of your citizens", bickering, cutting, chopping up bills to "suit" needs, YOU are “PLAYING POLITICS” with OUR HEALTH! WE, as those who VOTED you in, fully expect to be TAKEN CARE OF (Medicare is our money we invested for our older lives), NOT thrown "under the bus" and left to fall to pieces on the street! Why can you get your act together, quit bickering, stop putting other things in front of what is important to us, your constituents, and give SOME thought to how YOU would feel if this were YOUR MOM, YOU, or a loved one or friend? Would YOU rather some "pencil" pusher try to "save a buck" for an insurance company that is rich among the rich, as YOU or someone YOU LOVE is in INTRACTABLE PAIN, being told NO, you have this, that or the other, so NO, we do NOT think you NEED THIS! WHEN did IT GET, that the GOVERNMENT can TELL our DOCTORS what PATIENTS NEED??? I see it all the time... now medications, tests and so forth, our DOCTORS say WE NEED them. They have documentation to prove it! Yet, some STRANGER, that KNOWS NOTHING about ME, can just OVER RULE MY DOCTOR, and say NO, that patient does not need this!!! Again, how would you feel if it were you right now??? Or someone you love very much!!! I can bet YOU would be doing ALL YOU could to get SOMETHING DONE to HELP them!!! Now, I am NOT talking about doctors that are NOT legitimate, and do tests, etc.. for kickbacks etc. THOSE are NOT doctors to me, they are like vultures who need to be taken out of our system. They are ruining it for our GOOD physicians!!!!
I want to “THANK everyone” that “takes the TIME” to really READ this letter! It is extremely not only “critical” to my situation, I speak for MANY others out there, as also myself. As I said I hear it, I see it everyday from other patients, thus it is imperative that the system of Medicare, Health Care and Insurance are FIXED for us, as people, humans, flesh and blood. I would never wish this kind of pain on anyone at all, not even someone I did not really like… no one should ever have to go through this.
THIS is MY LETTER below to the President, the Senate, the House, The Head over Human Services, and anyone else that will read, including the Humana insurance bunch.
Well as someone who has suffered way more than I should ever have to, I am here to say, that any more "cuts", any more "changes to codes" or more "prior authorizations, or NOT paying the GOOD DOCTORS, so they STOP SEEING MEDICARE PATIENTS (ie especially MEDICARE ADVANTAGE PAYMENTS), will have the entire NATION SEEING PEOPLE IN THE STREETS, writhing in pain, and ready to just say FINE WE GIVE UP! Forget OUR "quality" of life! Forget YOUR CITIZENS being ABLE TO LIVE NORMAL LIVES! This is bringing our doctors and us as patients to OUR KNEES, taking away WHAT IS LIFE SAVING for MANY OF US! I have endured MORE PAIN in my life than ANYONE should have to! I have chronic illnesses that CAUSE PAIN! Lupus, Rheumatoid Arthritis, Degenerative Joint and DISC disease, 2, yes TWO Heart attacks (one due to pain possibly), Multiple Joint REPLACEMENTS, Kidney stones, migraines, Peripheral Neuropathy, Osteoporosis (which is SEVERE) and possibly causing my spine in places to have compression fractures, CHRONIC DOUBLE vision, tarsus tunnel, both of my THUMBS are WORN and Degenerated so badly they need replacement, like I ALREADY have in both KNEES and a RIGHT SHOULDER, now developing HIP pain, Lower back pain, stiffness, swelling, and my CERVICAL SPINE just had 4 LEVEL REPLACEMENT because it was so badly degenerated. ! I could GO ON! There is more. To Think, about 10 YEARS AGO, I was "NORMAL, working Mom, Wife and Daughter. I have had health issues ALL my LIFE, but when the LUPUS AND RA decided to "knock on my Door", MY ENTIRE LIFE changed overnight! I went from working, to have to completely stop. All of the heart issues, the joint issues, the ongoing migraines, and all of the "symptoms" that were going along due to "Lupus and RA" were taking their toll. I did NOT get DIAGNOSED until 10 YEARS ago with WHY my body was falling apart! I had my FIRST HEART ATTACK at the AGE 40! AND I am an avid exerciser daily, I eat extremely healthy, I watch every pound, I am the weight I am supposed to be, I Do NOT drink, I do not party, I DO NOT do any of the things that would be a factor in my "health problems". I was a 5 MILE A DAY WALKER, for years and years! I rarely eat "beef, pork, etc", and eat salads, veggies, fruits, fish, chicken, and stay away from fat, carbs, and high calories. So, thus the surprise when I woke up alone 20 miles away from any hospital or even ambulance for that matter, and DROVE MYSELF to the ER that morning! Good thing I did! That was only about 6 weeks before the day I turned 41!!!! As I began to have more and more pain, stiffness, fatigue, unexplained joint issues that called for surgery, blood abnormalities, more and more PAIN, that even was so bad, my doctor had to IMPLANT A PAIN PUMP so I can have enough relief. There is NO WAY to control MY pain without it! IT is totally intractable! But, this PUMP does NOT RID ME of ALL PAIN! If something "breaks", like a hip deteriorate, or I have a compression fracture of the spine due to the osteoporosis, the "Pump" does NOT completely relief that type of pain. In fact it is NOT relief but SOME of the pain! It gives ME BACK, a TOLERABLE LEVEL so I can have some QUALITY OF LIFE! WITHOUT IT, or with more ACUTE PAIN, then I am completely WITHOUT an NORMAL LIFE! I would be confined to a bed or sofa, and not be able to to anything, but probably scream in INTRACTABLE PAIN! There are reasons for pain, that even our doctors DO NOT KNOW YET! So, now you have a little background of just me, and I see hundreds, thousands, like me that have the same issues, some even worse than myself! They are dealing with exactly what I am. My "Medicare Advantage Plan" HAD been OKAY! UNTIL JANUARY 1ST 2014!!! When the “government” decided to take MEDICARE, then PICK AND CHOOSE, some of the CHANGES from "Obamacare", it totally put US on the WRONG SIDE of the table! Since January 1, 2013, I have FOUGHT to get every CLAIM PAID, due to this "NEW SYSTEM" that costs thousands of dollars at the doctors and hospitals. It is such a MESS, EVERY claim myself or my Mom (she is 80 and bless her heart, she takes care of me rather than how it should be ME helping HER!) I have to FIGHT the doctors, the hospitals, the entire medical scene, along with my MEDICARE ADVANTAGE PLAN! I have DOCTORS telling me I had better FIND SOMEONE ELSE, because THEY ARE GOING TO QUIT TAKING these PLANS and that they may not be able to even AFFORD TO SEE MEDICARE patients NEXT YEAR (2014)!!! These are experienced, well trained, incredible physicians that have "HELD" my body together, with their care! If If were no for them, I probably would NOT be here today. I almost died in 2010! Due to the Lupus and many complications, along with my 2ND HEART ATTACK while in the HOSPITAL, I almost died! Now (as of (July/August 2013) I NEED a special EPIDURAL LUMBAR INJECTION in my spine! I have once again ACUTELY began to have INTRACTABLE PAIN in my LOWER BACK, MY HIPS down into both FEET!!! It feels like someone is pouring HOT LAVA right DOWN my INNER BONES in both legs, from just above my HIPS down to the BOTTOMS of my FEET! I have been "ENDURING" this for WEEKS, and the doctors are doing all they can to FIND the problem and FIX IT! NO PAIN PUMP will STOP ACUTE PAIN or pain from something "broken" that needs to be repaired! IT is for chronic, long term pain. But it will NOT get rid of acute swelling, a compressed nerve, a worn out joint, and so forth! LAST WEEK, my Pain Specialist Physician (who already has the CT, the EMG the NCS) and "tests' to show nerve issues, damage and deterioration to my lumbar spine in which I NEED an INJECTION to first of all SEE IF it WILL HELP with swelling, inflammation and pain! Plus it can tell HIM MORE about what HE needs to do, to FIX THE PROBLEM! His staff as always send the proper RED TAPE PAPERWORK, into my (Medicare Advantage Plan for “APPROVAL”. Well, they DENIED the AUTHORIZATION!!! How CRAZY is that!!! NOW due to all the CHANGES I in these ADVANTAGE plans and MEDICARE, my MAP went to a "3RD PARTY" who does THEIR PAIN PAPERWORK! Which by the way NO ONE told myself or anyone I know about this "change" in how our claims are processed! So, this "3rd party" said "DUE to me having a PAIN PUMP" implanted”I did NOT NEED the INJECTIONS!!! That is total insanity! Who is there, working on pain patients authorizations and claims??? They are KNOW NOTHING about PAIN MANAGEMENT. IF they did, then they would KNOW ONE does NOT have A THING TO DO with the other!!!??? Just because I have a "pain medication pump" doe NOT mean it will just TAKE EVERY PAIN AWAY! If my hip, back, thumbs, feet, are 'damaged" and "worn" that type of pain has to be "fixed" in order for relief! If a NERVE is COMPRESSED, NO AMOUNT of PAIN medication will "release" and relieve pain from that NERVE!! That is like telling a diabetic, well your blood sugar is good today, we are NOT giving you any INSULIN!!! OR someone has a CAVITY and it is in the NERVE, and telling them WELL the PAIN PUMP will HANDLE IT, so we can't do anything but let you KEEP THE TOOTH! I APOLOGIZE for all of the “Capitalization!” I just cannot even find the words to describe what I am enduring now. You are NOT AWARE of the PAST 5 WEEKS of what I have and still am ENDURING!! I am in CONSTANT, INTRACTABLE PAIN! I have NO QUALITY OF LIFE! I CANNOT enjoy my Summer, my yard, I cannot clean my home, cook, or go to the store by myself. I cannot even go to my doctors myself, my husband has to totally take care of me! I barely move off the sofa for the most part, because due to pain, stiffness, swelling and NOW I have a SEVERE LUPUS FLARE and also the RA is acting up, that the fatigue, the face rash, all of the horrible symptoms of Lupus are here due to me having to endure so much pain. I cannot SLEEP, I cannot sit long, stand long, walk long... My life has TOTALLY been TAKEN OVER due to possible more damage in my LUMBAR SPINE, HIPS, THUMBS AND FEET DUE TO the Lupus and RA!!! Some of those things may have to be “fixed”, for that type of PAIN to be relieved! THIS is not ONLY EFFECTING me! IT it taking its TOLL on my SPOUSE, my MOM (who I am supposed to be helping out), my 2 children, and all of those that love and care for me. They are worried out of their minds! My husband is having to try and "juggle" everything I can't do now within his own work as a Web Developer, Designer, Database consultant and so forth, so his clients are taken care of, while HE ALSO TRIES to take care of ME! I know beyond a shadow of a doubt I am NOT the ONLY one out there. I see it day after day, week after week, those like myself that are having the exact same issues, if not worse than myself! While you sit in Washington, rather than "taking care of your citizens", bickering, cutting, chopping up bills to "suit" needs, YOU are “PLAYING POLITICS” with OUR HEALTH! WE, as those who VOTED you in, fully expect to be TAKEN CARE OF (Medicare is our money we invested for our older lives), NOT thrown "under the bus" and left to fall to pieces on the street! Why can you get your act together, quit bickering, stop putting other things in front of what is important to us, your constituents, and give SOME thought to how YOU would feel if this were YOUR MOM, YOU, or a loved one or friend? Would YOU rather some "pencil" pusher try to "save a buck" for an insurance company that is rich among the rich, as YOU or someone YOU LOVE is in INTRACTABLE PAIN, being told NO, you have this, that or the other, so NO, we do NOT think you NEED THIS! WHEN did IT GET, that the GOVERNMENT can TELL our DOCTORS what PATIENTS NEED??? I see it all the time... now medications, tests and so forth, our DOCTORS say WE NEED them. They have documentation to prove it! Yet, some STRANGER, that KNOWS NOTHING about ME, can just OVER RULE MY DOCTOR, and say NO, that patient does not need this!!! Again, how would you feel if it were you right now??? Or someone you love very much!!! I can bet YOU would be doing ALL YOU could to get SOMETHING DONE to HELP them!!! Now, I am NOT talking about doctors that are NOT legitimate, and do tests, etc.. for kickbacks etc. THOSE are NOT doctors to me, they are like vultures who need to be taken out of our system. They are ruining it for our GOOD physicians!!!!
I want to “THANK everyone” that “takes the TIME” to really READ this letter! It is extremely not only “critical” to my situation, I speak for MANY others out there, as also myself. As I said I hear it, I see it everyday from other patients, thus it is imperative that the system of Medicare, Health Care and Insurance are FIXED for us, as people, humans, flesh and blood. I would never wish this kind of pain on anyone at all, not even someone I did not really like… no one should ever have to go through this.
"TIS THROUGH!!! I HAVE HAD ENOUGH and THEY WON FINALLY.... I am no longer willing or able to fight them!
I CANNOT even begin to say just how UPSET, READY TO THROW IN THE TOWEL, FORGET ALL OF THIS CRAP ENTIRE MESS!!! I THOUGHT I had REACHED MY LIMIT last week, but YESTERDAY TAKES THE CAKE FOR ME!!!! My Pain specialist feels I NEED a Epidural Steroid Injection. He thinks we MAY see me get RELIEF from this INTRACTABLE PAIN I have been in again for for more WEEKS!!!! So, I go in last Friday for the "formality" of an office visit so he can get the "approval" through Humana for the procedure. Well, I had not heard by yesterday and I knew he wanted to do this injection ASAP, which means FRIDAY this week when he does his procedures! I call them, and the woman that does all of that said they "submitted" the forms, and are talking back and forth to Humana about this. So, in other words, sounds like my doctors office is doing their job. But, since that have not gotten AN APPROVAL, I told her I WOULD CALL also to see if I could help rush things up a little. If I don't get it approved by TODAY (Wed.) then I won't be put on the schedule and will have to wait until a WEEK FROM FRIDAY to be in pain!!!! So I call Humana. I get the same old run a round, sent her, sent there, need to talk to "prior" authorizations, which is where I was supposed to be anyway. I get another woman in "Prior" Authorizations, that tells me, well, I need to send you over to our "Pain Prior Authorization 3RD PARTY UNIT!!!) Now I am trying in my mind to decide what the hell that is! I knew Humana had done some things with "pain management" but SUPPOSEDLY TO HELP PATIENTS! BULL SHI^%!! I get there, not knowing "who" I am talking to. And some snot nosed girl, who had not a compassionate bone in her body tells me, "Well, your authorization was received last Friday. Okay and.... WE "denied" it yesterday"!!!! WHAT! My doctor said nothing!!! THEN I ASK WHY??!!! By this time I am almost hysterical. I am standing here in more pain than I can even describe. I just got through with a dental appt I could NOT afford and I still am so hoarse I can barely speak, and trying to get well enough to even go to the dentist and have the injection, and here this woman is telling me THIS.... "Well, YOU have an IMPLANTED PAIN PUMP, thus YOU DO NOT NEED INJECTIONS for PAIN! YOU HAVE PAIN CONTROL!!! Now, by this time, I am ready to throw the phone across the room, I am so hoarse I cannot utter ONE word to this insanity, and then she begins her "speech" about APPEAL!!! HELL APPEAL??? I DO NOT HAVE WEEKS!!! to get these INJECTIONS! And what the hell does me having a pain pump due with my back possibly having compressed nerves and inflammation, bone spurs etc in it??? So, JUST AS I SAID THIS PAST WEEK, NOW it is where it it a POLITICAL GAME with PATIENTS LIVES! I finally did enough research to find this "3RD PARTY" that does Humana's "pain management". They are ORTHO-NET!!! BELIEVE ME HUMANA had that information BURIED!!! I had to do some digging to find all of this out, but they have some "outside" agency, that is nothing but a bunch of "pencil" pushers, how have NO CLUE and DO NOT CARE ABOUT WHETHER I DIE OR LIVE!!! That is the truth! These people are getting Humana A DOLLAR OR TWO "SAVED", yes saved all right, while WE AS PATIENTS have to SUFFER THROUGH THEIR PENNY PINCHING GREED!! THIS is also part of 'OBAMA CARE"!!! THIS is WHY I was saying about the PETITION, WE HAVE GOT TO STOP THIS AT CONGRESS!!! Between all of the bickering and sitting and DOING NOTHING! THEY HAVE SCREWED US FOR SURE!!! I cannot say just how upset I am! As you can see I only slept about 3 hours and there is no way I can CONTINUE TO LIVE LIKE THIS!!! My "pain pump" is NOT for ACUTE pain, or NEW PAIN like a compression fracture. It is like denying to give you blood pressure medication one day since your blood pressure seems to look normal. Or telling a diabetic, well right now your blood sugar is good, so you do NOT need insulin!!! Or saying, okay well, you only have 2 gallstones, so YOU can HANG on until there are more!! I know it sounds insane, but THINK OF ALL THE WAYS this EFFECTS NOT JUST ME BUT YOU!!! I AM BEYOND the place of GIVING UP!!! I am way PAST THE TEARS, THE BEING PISSED, ETC.... I am just going to sit on my sofa, AND WITHER AWAY IN PAIN...NO MORE... I CANNOT TAKE NOT ONE MORE DAY OR ONE MORE PERSON WHO DOES NOT KNOW ME, telling me oh, you are all right you have a "pain pump"... I have had it.... THEY HAVE WON!!!!
Sunday, August 4, 2013
Where Do I Begin? Life & Illness in the World of Lupus and RA...
Here is a more "detailed" look into a Lupus patients life. You never know from one moment to the next what might happen. Some things are just life and they happen. But, as you read below, you will know why I feel someone rolled back and forth over me....
I am not sure where to begin. I know many of you are already aware of all the stressful medical things going on right now with me. I have been in almost intractable pain now AGAIN (2nd time since January), and the docs have not yet found out what is wrong. One thinks its the RA/Lupus. (I AM having a MAJOR FLARE right now). The other thinks my joints in my hips, and in my toes and thumb are extremely degenerated causing the pain. I had both injected last week. The other thinks it is a combination of just recently finding out I am very low on B-12 anemic. I just began taking the injections and pills... and will have to forever. My body will not do what it is supposed to with B-12. Then the real kicker, is due to the osteoporosis, my pain specialist, along with myself honestly, think I have a compression fracture(s) in my lower lumbar spine. Much of the severest part of the pain goes from my hips, down my legs, straight down into my heels. The are several other things probably contributing to it, like the myoglobin being high that also causing muscle pain. Then I began to have teeth just practically falling out of my mouth lately. I have already recently had some "patch" stuff done on my upper front teeth, and now one of those, plus yet another top front tooth has a small chunk out of it. The I have TWO, upper molars, both the same tooth on opposite sides, that within a week, both had an entire half of the tooth disappear. So, neither of those can be fixed and have to be pulled. Plus I found another cavity that at least can be saved in a bottom molar just a week ago again. Or course then we had my husband had to have a tooth pulled, I've had to have the pain pump refilled very early, due to the hospitals screw up so I had to PAY ANOTHER CO-PAY within 3 weeks of one another. They are the ones that did NOT get the medication in as they were supposed to. Plus I am facing probably, lumbar steroidal injections, probably next Friday. We BOTH just has have new glasses, and by the way they are both awesome, and I will just say 39dollarglasses IS incredible! My husband just had to PAY CASH for his every other month dr. visit, so he can get the meds he needs... and they decided to do 300.00!!! of blood work. The told him it would be ONLY 100.00 for him to pay. Well hell, ONLY??? 100.oois LOTS of money to us for sure. Gosh, and I feel horrible because I have not been able to even get out much at all. The heat makes it all worse. Well, then to top things off about a week ago yesterday, I work up very hoarse. My throat really was not sore or bothering me, I just almost had laryngitis. Well, that rocked along, and it seemed to be getting worse, and hanging around. Then about Sunday evening or Monday, the real fun began. My throat got SO SORE, including every part of my tongue, under and on it... the roof of my mouth covered and looked like it is going to bleed in the back of my throat, then I got the white gunk in there, and still not only can I not talk yet, this morning it is even worse. I can BARELY get a whisper out. IN all of this, I was using everything I had. First, I took antibiotics that I was given about 4 weeks ago. They had me on them, then said to get back off them when they found the B-12 anemia. Thus, I had 4 days of them left. So, I started popping them as directed, gargling with warm salt water as much as I could stand, putting peroxide in my mouth, and even dug out a bottle of "magic mouth wash" that is a script you use for thrush, a sore mouth, ulcers in the mouth and throat etc.. it has a couple of things in it to help heal and also numb the areas. So, I began using it, called for refills on it. I had refills but they had expired dammit. Well, I knew, about last Wednesday something was still very wrong. The mess seemed worse... so it dawned on me I also after all of the antibiotics lately probably have thrush. I have had it on several occasions and it needs of course Nystatin rinse, then my doctor gives me a straight oral lidocaine that is MUCH stronger than anything else. So, I call (and get my husband to talk for me) to tell his office EITHER I need a "sick visit") which would have been Thursday or Friday, OR if he wanted to, I feel too lousy to come in so just call in the medications he always uses for this. Well, they tell my husband that he has no appts. available. BUT the woman on the phone was NOT getting the fact that I would see one of the PA's. I did not have to see the main doctor, I just needed medication. I also told her to please ask hi to call in some Nystatin rinse, but forgot to mention the Diflucan and the lidocaine rinse. Well, hell of course they "missed" the boat on that one. He KNEW I probably had thrush. He also knew my immune system is SO messed up right now, me coming in to an office full of other sick people is probably not the best idea. Plus I already have TWO of the DENTIST appts set up. The first one, this coming Tuesday. And then the lumbar injections, and another dentist app. on the 12th... and see my RHEUMY FINALLY on the 14th!!! So, I NEED to get my mouth and throat well. The dentist I know will NOT touch me until my mouth is better. So, I CALL BACK Friday, let her know EXACTLY what the "usual" meds (all of them) are, spelling them to her etc... and they close at NOON on Fridays, SO I desperately needed to know if I was going to be asked to make a trip there or not.. Probably not, I thought. For one they must have everyone in Ennis sick or something. IT was almost like they did not even have any of their "sick" appointments they keep daily for someone such as I that need to be seen but the PA can do that, and take care of me for the most part. Well, I did NOT hear back from them BEFORE NOON!!!! Now I knew on Fridays they are in the office, but they do not take in patients on Friday afternoons. So, it could be that he was going to call all of the stuff in after he was settled and out of patient rooms. I was in tears and told my husband, that if my PCP did not call something in, I against how I feel about it, MUST go to the ER! I CANNOT physically afford to be very ill with an infection, thrush etc... I could easily get extremely ill quickly. So, LUCKILY, we had out contention plan ready. Supposedly we have a new clinic here in my home town that takes walk ins and they are supposed to be open on Weekends... you don't need an appointment etc... if they were not available and I was NO better, then we would do the dirty deed of ER. I NEEDED those meds. Well, FINALLY about 3:30 my docs offices calls. The woman says "okay, he said he sent in both scripts to your pharmacy. I was so thrilled, other than I knew we have been having HUGE issues with the PCP emailing scripts to our pharmacies ESPECIALLY Wal Greens. So I hurriedly called the pharmacy, well Jim did, to find out if those scripts did arrive for filling. Well, that part was at least not a huge ordeal. But, my throat STILL feels like I swallowed razor blades. It is not any better as far as my voice. In fact earlier it was worse. I cannot utter a word. BUT I did get the Diflucan script, along with the Nystatin and the lidocaine to numb it. I don't know how much I have "left out", as far as me "health wise", BUT I also have a couple of "family" issues, that are upsetting me extremely. I won't go into details, but they are just crazy. I have issues with a person (relative) that decides to have "drama" in their lives and upset everyone, including my Mom, every time I GET SICK!!! IT is true, and there is lots that goes along with that, like lying,borrowing money, losing two or three jobs... and so forth... and then we are just kind of getting a bit worried about our own money situation. Of course you can see all of the expense of the above is crazy... and then jobs for my Husband have been not a big of projects, or some put off (his clients) also due to the economic situation. Either they have the money, but are holding off for awhile. Or they themselves just do not have it right now. So, that is really stressing me out... And I know, bless his heart, he feels "guilty"... and as I have said to him a billion times, it is not his fault that our nation is in the crapper! Plus working from home, being a web developer, designer, and all of the other complex database stuff... makes it more difficult. Trying to get a new client now is hard, then your current ones are cutting corners. thus you just have to save what you can, pay off stuff with cash and not run up bills you can't pay... and watch how you spend it. Anyway, all of that on top of ALL of this MEDICAL mess with me is beyond words..
I am not sure where to begin. I know many of you are already aware of all the stressful medical things going on right now with me. I have been in almost intractable pain now AGAIN (2nd time since January), and the docs have not yet found out what is wrong. One thinks its the RA/Lupus. (I AM having a MAJOR FLARE right now). The other thinks my joints in my hips, and in my toes and thumb are extremely degenerated causing the pain. I had both injected last week. The other thinks it is a combination of just recently finding out I am very low on B-12 anemic. I just began taking the injections and pills... and will have to forever. My body will not do what it is supposed to with B-12. Then the real kicker, is due to the osteoporosis, my pain specialist, along with myself honestly, think I have a compression fracture(s) in my lower lumbar spine. Much of the severest part of the pain goes from my hips, down my legs, straight down into my heels. The are several other things probably contributing to it, like the myoglobin being high that also causing muscle pain. Then I began to have teeth just practically falling out of my mouth lately. I have already recently had some "patch" stuff done on my upper front teeth, and now one of those, plus yet another top front tooth has a small chunk out of it. The I have TWO, upper molars, both the same tooth on opposite sides, that within a week, both had an entire half of the tooth disappear. So, neither of those can be fixed and have to be pulled. Plus I found another cavity that at least can be saved in a bottom molar just a week ago again. Or course then we had my husband had to have a tooth pulled, I've had to have the pain pump refilled very early, due to the hospitals screw up so I had to PAY ANOTHER CO-PAY within 3 weeks of one another. They are the ones that did NOT get the medication in as they were supposed to. Plus I am facing probably, lumbar steroidal injections, probably next Friday. We BOTH just has have new glasses, and by the way they are both awesome, and I will just say 39dollarglasses IS incredible! My husband just had to PAY CASH for his every other month dr. visit, so he can get the meds he needs... and they decided to do 300.00!!! of blood work. The told him it would be ONLY 100.00 for him to pay. Well hell, ONLY??? 100.oois LOTS of money to us for sure. Gosh, and I feel horrible because I have not been able to even get out much at all. The heat makes it all worse. Well, then to top things off about a week ago yesterday, I work up very hoarse. My throat really was not sore or bothering me, I just almost had laryngitis. Well, that rocked along, and it seemed to be getting worse, and hanging around. Then about Sunday evening or Monday, the real fun began. My throat got SO SORE, including every part of my tongue, under and on it... the roof of my mouth covered and looked like it is going to bleed in the back of my throat, then I got the white gunk in there, and still not only can I not talk yet, this morning it is even worse. I can BARELY get a whisper out. IN all of this, I was using everything I had. First, I took antibiotics that I was given about 4 weeks ago. They had me on them, then said to get back off them when they found the B-12 anemia. Thus, I had 4 days of them left. So, I started popping them as directed, gargling with warm salt water as much as I could stand, putting peroxide in my mouth, and even dug out a bottle of "magic mouth wash" that is a script you use for thrush, a sore mouth, ulcers in the mouth and throat etc.. it has a couple of things in it to help heal and also numb the areas. So, I began using it, called for refills on it. I had refills but they had expired dammit. Well, I knew, about last Wednesday something was still very wrong. The mess seemed worse... so it dawned on me I also after all of the antibiotics lately probably have thrush. I have had it on several occasions and it needs of course Nystatin rinse, then my doctor gives me a straight oral lidocaine that is MUCH stronger than anything else. So, I call (and get my husband to talk for me) to tell his office EITHER I need a "sick visit") which would have been Thursday or Friday, OR if he wanted to, I feel too lousy to come in so just call in the medications he always uses for this. Well, they tell my husband that he has no appts. available. BUT the woman on the phone was NOT getting the fact that I would see one of the PA's. I did not have to see the main doctor, I just needed medication. I also told her to please ask hi to call in some Nystatin rinse, but forgot to mention the Diflucan and the lidocaine rinse. Well, hell of course they "missed" the boat on that one. He KNEW I probably had thrush. He also knew my immune system is SO messed up right now, me coming in to an office full of other sick people is probably not the best idea. Plus I already have TWO of the DENTIST appts set up. The first one, this coming Tuesday. And then the lumbar injections, and another dentist app. on the 12th... and see my RHEUMY FINALLY on the 14th!!! So, I NEED to get my mouth and throat well. The dentist I know will NOT touch me until my mouth is better. So, I CALL BACK Friday, let her know EXACTLY what the "usual" meds (all of them) are, spelling them to her etc... and they close at NOON on Fridays, SO I desperately needed to know if I was going to be asked to make a trip there or not.. Probably not, I thought. For one they must have everyone in Ennis sick or something. IT was almost like they did not even have any of their "sick" appointments they keep daily for someone such as I that need to be seen but the PA can do that, and take care of me for the most part. Well, I did NOT hear back from them BEFORE NOON!!!! Now I knew on Fridays they are in the office, but they do not take in patients on Friday afternoons. So, it could be that he was going to call all of the stuff in after he was settled and out of patient rooms. I was in tears and told my husband, that if my PCP did not call something in, I against how I feel about it, MUST go to the ER! I CANNOT physically afford to be very ill with an infection, thrush etc... I could easily get extremely ill quickly. So, LUCKILY, we had out contention plan ready. Supposedly we have a new clinic here in my home town that takes walk ins and they are supposed to be open on Weekends... you don't need an appointment etc... if they were not available and I was NO better, then we would do the dirty deed of ER. I NEEDED those meds. Well, FINALLY about 3:30 my docs offices calls. The woman says "okay, he said he sent in both scripts to your pharmacy. I was so thrilled, other than I knew we have been having HUGE issues with the PCP emailing scripts to our pharmacies ESPECIALLY Wal Greens. So I hurriedly called the pharmacy, well Jim did, to find out if those scripts did arrive for filling. Well, that part was at least not a huge ordeal. But, my throat STILL feels like I swallowed razor blades. It is not any better as far as my voice. In fact earlier it was worse. I cannot utter a word. BUT I did get the Diflucan script, along with the Nystatin and the lidocaine to numb it. I don't know how much I have "left out", as far as me "health wise", BUT I also have a couple of "family" issues, that are upsetting me extremely. I won't go into details, but they are just crazy. I have issues with a person (relative) that decides to have "drama" in their lives and upset everyone, including my Mom, every time I GET SICK!!! IT is true, and there is lots that goes along with that, like lying,borrowing money, losing two or three jobs... and so forth... and then we are just kind of getting a bit worried about our own money situation. Of course you can see all of the expense of the above is crazy... and then jobs for my Husband have been not a big of projects, or some put off (his clients) also due to the economic situation. Either they have the money, but are holding off for awhile. Or they themselves just do not have it right now. So, that is really stressing me out... And I know, bless his heart, he feels "guilty"... and as I have said to him a billion times, it is not his fault that our nation is in the crapper! Plus working from home, being a web developer, designer, and all of the other complex database stuff... makes it more difficult. Trying to get a new client now is hard, then your current ones are cutting corners. thus you just have to save what you can, pay off stuff with cash and not run up bills you can't pay... and watch how you spend it. Anyway, all of that on top of ALL of this MEDICAL mess with me is beyond words..
Saturday, August 3, 2013
Osteoporosis! Why have my physicians NOT told me about these??? Medications to help "regrow" bone.
http://healthyliving.msn.com/health-wellness/aging/combo-drug-therapy-may-work-best-to-strengthen-bones-study#scpshrtu
http://www.forteo.com/Pages/index.aspx
http://www.prolia.com/
THIS IS SUCH incredible news!!! BUT< WHY have my DOCTORS NOT TOLD ME abut it????? I have SEVERE osteoporosis!!! That is even what my "test" says on my radiological reading. I have been on the medication to just hopefully help me to not get a fracture. BUT, it DOES NOT do what these two medications do!!! And talk about being a candidate for this therapy! My pain doctor suspects I may have a "compression" fracture in my lumber spine!!! That is why he is supposed to be doing epidural steroid injections next week. Well, a compression fracture of the spine is caused by osteoporosis. And I do not have to "do" anything. As many of you laides know that are dealing with this also. You can be sitting on your sofa and a vertebra can decide to "fall apart". Due to the severe brittlenes of our bones, you can be walking along and your hip break. I have a friend of the family this just happened to. She was walking in her hall way at home, and she lives alone, and her hip broke!!! It is nuts! Also, with the daily dose of prednisone I am on for the RA/Lupus that is another huge factor in taking this. I am the "double indemnity" patient... I have BOTH!!! And at my age I do NOT want to begin having my spine compress just because of nothing, if I can do something to avoid it!!! I hope any of you with this tell your doctors also. I am taking this to my Rheumatologist next week when I have my appointment. I am going to almost demand they try and get my insurance to "approve" it if I need certain things. I certainly meet the "criteria" and more... I will say that you have to have this by injection once monthly. So, you may be giving yourself a shot, and I am not sure if they have it "combined" yet, or you take both once a month. I figure it is once a month for each of them. Well, I already do that with my Vitamin B monthly and I do it weekly with the Humira, so nothing new for me... I will also attach the 2 URL"S that tell about these medications..
Here are the two URL's to the medications for all that want to know.http://www.forteo.com/Pages/index.aspx
http://www.prolia.com/
The Ethical vs. Unethical Realms of Doctors and Drug Screenings with Pain Patients
I totally understand the physicians doing on occasional screening... it makes sense and some new patients and so forth I can see doing them more often... but this article really puts LIGHT on some of the reasons other than "drugs in the system" and screenings....
http://www.nytimes.com/2013/08/02/business/increase-in-urine-testing-raises-ethical-questions.html?pagewanted=1&_r=0&src=recg
Just another look at what is going on within the ever changing realms of chronic pain patients, the medical side of it, and the "political" and "lobbyist" side of it11
http://www.nytimes.com/2013/08/02/business/increase-in-urine-testing-raises-ethical-questions.html?pagewanted=1&_r=0&src=recg
Just another look at what is going on within the ever changing realms of chronic pain patients, the medical side of it, and the "political" and "lobbyist" side of it11
Friday, August 2, 2013
Toni Berhard's "NOT To-Do List for the Chronically Ill"
This is totally awesome!!!! I just have to share. All of these of course are exactly what we as "chronically ill" people find ourselves DOING rather than NOT doing... Here is the URL:
http://www.psychologytoday.com/blog/turning-straw-gold/201308/not-do-list-the-chronically-ill
http://www.psychologytoday.com/blog/turning-straw-gold/201308/not-do-list-the-chronically-ill
A Not-To-Do List for the Chronically Ill
Items that belong on a not-to-do list for those with chronic pain or illness.
Published on August 2, 2013 by Toni Bernhard, J.D. in Turning Straw Into Gold
Thursday, August 1, 2013
Seems like another ever winding road around the bend....
A bit more on updates... of course hurry up and wait... I shall give more information as soon as I feel like sitting in this chair... but here is a little...
Thank you so much Nancy Hershelman Gipson and Clarissa Shepherd!!! I love butterflies... they make me feel the freedom I so long to have from pain... well, that stupid waste of our time office visit is done, and it is HOTTER THAN HELL HERE... OMG Nancy, I know you have to be burning up also... we are under a heat advisory until tomorrow night... it will just take your breath out there... I am totally EXHAUSTED!!!! So, I will read and answer tomorrow or mmmmm probably more like by 2am, knowing me.... So, now of course the same old dog and pony show. My Doctor has to get Humana the paperwork so they can approve the injections. Then they will get me scheduled for them over at the outpatient center probably (I cross my eyes and fingers) NEXT Friday BEFORE he does the shots. Dammit, he has his "special" days at the hospital and he will probably make me wait until Friday. But, he upped my pain medication BOTH in the pump (I am not sure I told anyone he did that on Tuesday) ... It gives me more round the clock now than it was... AND I am still on the every 6 hour oral pain meds also... so the pain is somewhat "at bay" off and on now. You know he showed me something today I never thought about. When he comes over to the outpatient center to do my refill on the pump, he is "one doctor". Yet, in the office, I almost do not recognize him at all, as far as personality. HE is like Dr. Jekell and Mr. Hyde honestly. When he is over there AWAY from THE ENTIRE OFFICE SITUATION, he TELLS IT LIKE IT IS... he is bold about all of it, from insurance to my pump, etc... yet today, he was just like well, tell me what is happening (like he did not know) ... I answered all of his questions, and he kind of just "took all" with a grain of salt. HE was SO EXTREMELY UPSET Tuesday about what is really going on with me... and what we have to do to get me fixed... yet today he made it sound like no big deal... and I should be ready to go with a little shot... I told Jim if he knew the damned guy or not!!!! BUT, in that office, he has two associates. And I think he has to Keep them in mind, because those office walls can be heard through. It was just so eery to see him act like two totally different doctors. I will explain more later, but like I said, I think it had to do with "what the staff" needed and NOT needed to know or over hear... and due to the two doctors there, he had to Keep in check... it was strange... alright.. well I feel like a run over shoe... without hardly any heel left... Love you all for being so good to me.... Hugs Rhia (by the way, everyone is LOVING this laryngitis stuff ...LOL... I am totally silent... I can't utter a word. but... my throat feels more horrid than ever before and my entire mouth and tongue itch so badly... I just got a call from my PCP though.. he is calling me some medication in... thank goodness. :):) So, maybe I won't have to go in tomorrow to see him and can stay the hell at home...
Just some updates on all that is going on... I also am in the process of getting several doctors appointments. One for my feet, my dentist's ones that are already on the books, plus now I have freaking laryngitis, and I know I must have a throat infection. My throat is so bad, it feels like razor blades go down in it and I can't stand to eat hardly anything. Now my voice just completely left yesterday. So, I am dealing with that, trying to get it well for the dentist next week, plus will probably have those lumbar injections if they can get all of the paper work, scheduling etc. done quickly enough. Please post any of you... anything pertinent, about these illnesses, about Medicare and Insurance, ... I would love to hear from you.... So, below are some FB posts that need to be here also....:)
By the way, here is a website for information on the "Prialt" I speak about for pain control. I was going to post their own website, but it appears it is "under construction"....
http://www.webmd.com/drugs/drug-92576-Prialt+IT.aspx?drugid=92576&drugname=Prialt+IT
Too early once again. Lots going on. For one we DID get my pain pump completely filled. But the bad is I maybe looking at an extreme change in medications in the pump. Due to my extensive change in my pain, and we are just not getting it under control nearly enough, my pain specialist is talking about changing to something like a compounded medication which would be done at the huge research hospital where they have the specialists to do that. OR the other thing he mentioned was switching me over to "Prialt". I am somewhat knowledgeable about this medication, although I had no idea that they do use it in the pain pumps. It is a medication NOT narcotic at all, but it acts more on the "neuro" side of the issues with pain control. If anyone knows about it, it is made directly from "sea snail venom", and was happened about after someone got stung by one, and the story became happily for them for sure. More like a "neuro" impulse stopper, like Botox I think is what it is supposed to be... yet it is supposed to be much more powerful than ANY type of pain control in the world. Of course with that comes, LOTS of changes slowly again, adjusting the med, then getting me slowly off the narcotics so I won't just fall over and pass away. His "wheels" were turning yesterday when he came to put the medication in the pump. He is really trying to figure out FIRST of all WHERE my pain is coming from so suddenly again, how we can fix it, and how to get the pain back under control with the pump. I see him again today.. damned I hate yet another jaunt to Dallas... so he can get the insurance to approve doing some epidural lumbar steroid injections as soon as possible. We think the sudden horrid pain may be coming from my hips or lower back. I DO have bursitis, and my orthopedic surgeon injected those last Friday. They have been so sore and hurting I was not sure the injections done a thing. But, it seems yesterday I did notice a bit hip relief. So, it takes about 5 days for those steroid joint injections to do their job. The other issue could be I have a compression type of fracture in my lumbar spine. Since I have "severe" osteoporosis, it could be that has happened at any time, and other than pain after it happened suddenly, I may not even have known. Usually with compression type vertebra fractures they can do it when you are doing nothing. You do not really "cause" them, they just crumble suddenly whenever they decide. So, that could very well be a big piece of the pain puzzle.
I am dealing with this very issue right now. I already have Sjogren's and osteoporosis, which certainly does not help. I have been avid as possible about the dry mouth, and even went back on prescription meds this past week due to severe, all of a sudden bad tooth problems. About 5 months ago, I had a chuck break off the inside of my top front tooth and the then side. It felt like it just crumbled into powder. From there, I had another one that had a cavity, and I have not had a cavity since I was 10. Then a couple of months ago, I had one top molar just come into two pieces. The back half broke off of it. About 2 days later the same tooth on the opposite had the entire side bust off of it. Then while I was looking at those, heck I noticed a cavity coming out in another back tooth, the very last one on the bottom!!!! I about went ballistic!!! I could not believe all of a sudden I had that much going on with my teeth. I am continually chewing sugar free gum, I definitely brush my teeth, most of the time twice a day. I use peroxide in my mouth after every brushing. I clean food out of my teeth with those handled plaque removers after every meal. I wet my mouth all the time... and so forth. Plus I have fought mouth issues with infection, thrush a time or two, mouth ulcers, so something seems to be going on, but never this much as far as they are just falling apart. All of us know the dentist is NOT CHEAP! Even mine that I know and have used for at least 20 years or more, has RA himself. So, he is limited as to even what he can and can't do now. He cannot pull the two top ones, and they can't be saved. He can fix the bottom cavity, and then he continues to "patch" up the smaller places in my front top teeth. And even with his "break" because he knows our situation, still when you have to make more than one trip it gets expensive. And of course we have NO dental coverage. I never had any that was worth a crap anyway. And my husband just had one of his same morals have to be pulled about a month ago. So, that one already cost us. I can remember paying about 45.00 to 55.00 or so for a cavity fill. And he usually charges like 25.00 to clean. But most of them charge at least 95.00 to pull one. And usually you can't get them to do them at the same time, which probably would be cheaper. One less office visit charge for sure. My own dentist will have to send me to another one here in town he works with for patients like myself, that has something mine can no longer due since he himself has massive pain, inflammation etc with osteoarthritis and RA. So, this other dentist does charge about what mine does. Which is nice. Still 4 office visits are probably going to cost me at last 90.00 each!!! And that is only the top of the deep well of medical expenses for us lately. Both of us have new glasses. Well, my husbands came in and they are awesome!!!! Mine should be here possibly tomorrow or Saturday. We got them from 39.00 glasses.com... and believe me the savings are exceptional. I know we saved a bundle on both of ours. Jim is just about legally blind so his are not cheap. Plus his eyes changed so much, that he had to go to a progressive lens (LOL), then we both get the "Transitions" in them. so, his usually due to the type of lens and thickness run at least 300.00, maybe more with frames. Mine now are of course progressive, but also both lenses have the prisms in them also. Which costs me more too. So, between us, we saved over 50%!!! So far his are perfect and he loves them. I have ordered from them before and loved mine, so I am hoping mine are perfect also. So, any of you doing glasses, you might take a look at their website. You may be able to really save a bundle on glasses. And they have a 100 percent you love them guarantee and that they will be correct, plus they are fast, and their customer service is wonderful. I have been very happy with the whole experience. Well, sorry for my rambling. I am making up "typing" for not being able to utter one word with the laryngitis. Boy my dogs look at me crazy!!! They were puzzled when I tried to talk to them yesterday.... you ladies I pray have good days ahead, without pain and fatigue.... and hoping for all of us to have a better quality of life....
Thank you so much Nancy Hershelman Gipson and Clarissa Shepherd!!! I love butterflies... they make me feel the freedom I so long to have from pain... well, that stupid waste of our time office visit is done, and it is HOTTER THAN HELL HERE... OMG Nancy, I know you have to be burning up also... we are under a heat advisory until tomorrow night... it will just take your breath out there... I am totally EXHAUSTED!!!! So, I will read and answer tomorrow or mmmmm probably more like by 2am, knowing me.... So, now of course the same old dog and pony show. My Doctor has to get Humana the paperwork so they can approve the injections. Then they will get me scheduled for them over at the outpatient center probably (I cross my eyes and fingers) NEXT Friday BEFORE he does the shots. Dammit, he has his "special" days at the hospital and he will probably make me wait until Friday. But, he upped my pain medication BOTH in the pump (I am not sure I told anyone he did that on Tuesday) ... It gives me more round the clock now than it was... AND I am still on the every 6 hour oral pain meds also... so the pain is somewhat "at bay" off and on now. You know he showed me something today I never thought about. When he comes over to the outpatient center to do my refill on the pump, he is "one doctor". Yet, in the office, I almost do not recognize him at all, as far as personality. HE is like Dr. Jekell and Mr. Hyde honestly. When he is over there AWAY from THE ENTIRE OFFICE SITUATION, he TELLS IT LIKE IT IS... he is bold about all of it, from insurance to my pump, etc... yet today, he was just like well, tell me what is happening (like he did not know) ... I answered all of his questions, and he kind of just "took all" with a grain of salt. HE was SO EXTREMELY UPSET Tuesday about what is really going on with me... and what we have to do to get me fixed... yet today he made it sound like no big deal... and I should be ready to go with a little shot... I told Jim if he knew the damned guy or not!!!! BUT, in that office, he has two associates. And I think he has to Keep them in mind, because those office walls can be heard through. It was just so eery to see him act like two totally different doctors. I will explain more later, but like I said, I think it had to do with "what the staff" needed and NOT needed to know or over hear... and due to the two doctors there, he had to Keep in check... it was strange... alright.. well I feel like a run over shoe... without hardly any heel left... Love you all for being so good to me.... Hugs Rhia (by the way, everyone is LOVING this laryngitis stuff ...LOL... I am totally silent... I can't utter a word. but... my throat feels more horrid than ever before and my entire mouth and tongue itch so badly... I just got a call from my PCP though.. he is calling me some medication in... thank goodness. :):) So, maybe I won't have to go in tomorrow to see him and can stay the hell at home...
Just some updates on all that is going on... I also am in the process of getting several doctors appointments. One for my feet, my dentist's ones that are already on the books, plus now I have freaking laryngitis, and I know I must have a throat infection. My throat is so bad, it feels like razor blades go down in it and I can't stand to eat hardly anything. Now my voice just completely left yesterday. So, I am dealing with that, trying to get it well for the dentist next week, plus will probably have those lumbar injections if they can get all of the paper work, scheduling etc. done quickly enough. Please post any of you... anything pertinent, about these illnesses, about Medicare and Insurance, ... I would love to hear from you.... So, below are some FB posts that need to be here also....:)
By the way, here is a website for information on the "Prialt" I speak about for pain control. I was going to post their own website, but it appears it is "under construction"....
http://www.webmd.com/drugs/drug-92576-Prialt+IT.aspx?drugid=92576&drugname=Prialt+IT
Too early once again. Lots going on. For one we DID get my pain pump completely filled. But the bad is I maybe looking at an extreme change in medications in the pump. Due to my extensive change in my pain, and we are just not getting it under control nearly enough, my pain specialist is talking about changing to something like a compounded medication which would be done at the huge research hospital where they have the specialists to do that. OR the other thing he mentioned was switching me over to "Prialt". I am somewhat knowledgeable about this medication, although I had no idea that they do use it in the pain pumps. It is a medication NOT narcotic at all, but it acts more on the "neuro" side of the issues with pain control. If anyone knows about it, it is made directly from "sea snail venom", and was happened about after someone got stung by one, and the story became happily for them for sure. More like a "neuro" impulse stopper, like Botox I think is what it is supposed to be... yet it is supposed to be much more powerful than ANY type of pain control in the world. Of course with that comes, LOTS of changes slowly again, adjusting the med, then getting me slowly off the narcotics so I won't just fall over and pass away. His "wheels" were turning yesterday when he came to put the medication in the pump. He is really trying to figure out FIRST of all WHERE my pain is coming from so suddenly again, how we can fix it, and how to get the pain back under control with the pump. I see him again today.. damned I hate yet another jaunt to Dallas... so he can get the insurance to approve doing some epidural lumbar steroid injections as soon as possible. We think the sudden horrid pain may be coming from my hips or lower back. I DO have bursitis, and my orthopedic surgeon injected those last Friday. They have been so sore and hurting I was not sure the injections done a thing. But, it seems yesterday I did notice a bit hip relief. So, it takes about 5 days for those steroid joint injections to do their job. The other issue could be I have a compression type of fracture in my lumbar spine. Since I have "severe" osteoporosis, it could be that has happened at any time, and other than pain after it happened suddenly, I may not even have known. Usually with compression type vertebra fractures they can do it when you are doing nothing. You do not really "cause" them, they just crumble suddenly whenever they decide. So, that could very well be a big piece of the pain puzzle.
I am dealing with this very issue right now. I already have Sjogren's and osteoporosis, which certainly does not help. I have been avid as possible about the dry mouth, and even went back on prescription meds this past week due to severe, all of a sudden bad tooth problems. About 5 months ago, I had a chuck break off the inside of my top front tooth and the then side. It felt like it just crumbled into powder. From there, I had another one that had a cavity, and I have not had a cavity since I was 10. Then a couple of months ago, I had one top molar just come into two pieces. The back half broke off of it. About 2 days later the same tooth on the opposite had the entire side bust off of it. Then while I was looking at those, heck I noticed a cavity coming out in another back tooth, the very last one on the bottom!!!! I about went ballistic!!! I could not believe all of a sudden I had that much going on with my teeth. I am continually chewing sugar free gum, I definitely brush my teeth, most of the time twice a day. I use peroxide in my mouth after every brushing. I clean food out of my teeth with those handled plaque removers after every meal. I wet my mouth all the time... and so forth. Plus I have fought mouth issues with infection, thrush a time or two, mouth ulcers, so something seems to be going on, but never this much as far as they are just falling apart. All of us know the dentist is NOT CHEAP! Even mine that I know and have used for at least 20 years or more, has RA himself. So, he is limited as to even what he can and can't do now. He cannot pull the two top ones, and they can't be saved. He can fix the bottom cavity, and then he continues to "patch" up the smaller places in my front top teeth. And even with his "break" because he knows our situation, still when you have to make more than one trip it gets expensive. And of course we have NO dental coverage. I never had any that was worth a crap anyway. And my husband just had one of his same morals have to be pulled about a month ago. So, that one already cost us. I can remember paying about 45.00 to 55.00 or so for a cavity fill. And he usually charges like 25.00 to clean. But most of them charge at least 95.00 to pull one. And usually you can't get them to do them at the same time, which probably would be cheaper. One less office visit charge for sure. My own dentist will have to send me to another one here in town he works with for patients like myself, that has something mine can no longer due since he himself has massive pain, inflammation etc with osteoarthritis and RA. So, this other dentist does charge about what mine does. Which is nice. Still 4 office visits are probably going to cost me at last 90.00 each!!! And that is only the top of the deep well of medical expenses for us lately. Both of us have new glasses. Well, my husbands came in and they are awesome!!!! Mine should be here possibly tomorrow or Saturday. We got them from 39.00 glasses.com... and believe me the savings are exceptional. I know we saved a bundle on both of ours. Jim is just about legally blind so his are not cheap. Plus his eyes changed so much, that he had to go to a progressive lens (LOL), then we both get the "Transitions" in them. so, his usually due to the type of lens and thickness run at least 300.00, maybe more with frames. Mine now are of course progressive, but also both lenses have the prisms in them also. Which costs me more too. So, between us, we saved over 50%!!! So far his are perfect and he loves them. I have ordered from them before and loved mine, so I am hoping mine are perfect also. So, any of you doing glasses, you might take a look at their website. You may be able to really save a bundle on glasses. And they have a 100 percent you love them guarantee and that they will be correct, plus they are fast, and their customer service is wonderful. I have been very happy with the whole experience. Well, sorry for my rambling. I am making up "typing" for not being able to utter one word with the laryngitis. Boy my dogs look at me crazy!!! They were puzzled when I tried to talk to them yesterday.... you ladies I pray have good days ahead, without pain and fatigue.... and hoping for all of us to have a better quality of life....
Monday, July 29, 2013
The (My, for sure) Mind Boggling World of Lupus, RA and Their Destructiveness and Severe Pain
(partial post that I put up on FB answering a friends questions... and it seems to fit here very well also.)
You are so right on the "bionic" woman part for sure !!!!! I will try and not miss any of your questions ...
brain fog can be heck.. as far as the "symptoms" of
Lupus/RA/Degenerative Joint and Disc Disease (and others)... several of
those symptoms like my joints deteriorating and needing surgery very
early in life, severe chronic pain in my joints, stiffness, swelling,
filling full of fluid.. all of those have been with me since about the
age of 30. I had joint issues and a couple of surgeries actually by 25,
but at the time they thought those issues were strictly related to an
old accident I had playing baseball with my cousins when I was about 15.
I also had severe migraines by the time I was 17 (I feel those may have
been some of the "beginnings" of the entire thing). About the age of
35, both shoulders and elbows had already had many corticosteroids
injections. I was continually in pain with one or more of them. They
would swell, fill with fluid, be hot to the touch, I would have
sometimes hardly any motion in them. Yet at that time, it was a I guess
way too early, plus the "RA,Lupus" stuff at the time was really not
something even the medical profession knew a great deal about. I was
told I had "genetically inherited" bad early osteoarthritis. After that
the surgeries, tests, injections... mainly my joints it was attacking
then, and still much of it is joints falling apart. I had various other
symptoms throughout my life... chronic pain and the joint issues, plus
at 40, I had my FIRST heart attack! I think if the doctors would have
known MORE about Lupus at that time, and RA, and all of the autoimmune
stuff, they may have been able to put it all together. Yet, back then,
it just still was so much unknown about any of these illnesses. I DO
know a couple of very young women at that time, that did have Lupus, and
back then it was basically a "death sentence". Not many had heard of
it, and if so they knew nothing about what was happening to our bodies.
So, in 2005, I came back to TX, after living in Seattle for 5 years. I
had a "frozen" shoulder for about the last 2 years I was there. I had no
insurance because I had already gotten too ill to really work, my heart
acted up some, the headaches were unbearable, I had chronic eye
infections one after the other, my energy level was off (but it was like
that throughout my adult life), and I was just not able to take the
stress of a job. Then in 2003, in fact I was in the process of beginning
a brand new job that morning in October, and I was so ill driving
through down town rush hour Seattle traffic, I had to turn around, call
my new job, and go directly to an "acute care clinic". I had DOUBLE
pneumonia & WHOOPING COUGH! The doctors treated me at home, with
several visits back and forth, and did their best to keep me out of the
hospital, due to not having insurance. I was VERY lucky, but it took me
over a month honestly to really get well. I went to work after about 10
days, but I will really still too sick to be there. Yet, I HAD to have
that job, and did not want to Lose it before I even got there. Thus I
went to work. The entire time of about a year there, I was ill
constantly. Either a lung infections, eye infections, severe migraines,
too fatigued to even get dressed, then my heart acted up. Jim and I were
almost "brand new" in being together. We had only known one another
about 4 months or so, when my heart had a "bump" in the road. I had an
overnight stay in the hospital, and when I got out went by my work with a
NOTE in hand... I was NOT able to work per the doctor for at least 3 to
5 days more. Well, basically, I was told I could "resign" or be
terminated either one. I chose the first. I figured as soon as Jim found
out, he would probably RUN! I would not blame anyone for running as far
away from this "ill" woman as possible. We had already developed a
special bond ( from the first date we always say), and not only did he
stay, he was the one that was set on me NOT going for another job, and
for me to try and find OUT WHY I WAS SO ILL. A few months later, my
lease was up on my apartment, so I moved into a house with him and his
good friend. It was big, and just the two of them. So, he basically took
care of me financially, while I began getting medical assistance so I
could be able to even go to a doctor. I finally did get some temporary
WA state help medically with doctors, medications and so forth. They
even helped me pay some of my gas to and from doctors, I got a tiny
"stipend" monthly to help out with the bills, etc. Still no one could
get it figured out. I was continually either in pain, or had a joints,
more like joints acting up, or sickly off and on. So, after moving back
here in 2005, I went to an orthopedic surgeon here in my home town, that
was fairly new. He had done my Mom's carpal tunnel surgery about 9
months before I got back here, and still with no insurance, I knew there
was probably little he could do. BUT, I had ALL of my medical records
from the past like 10 years with me, and HE WAS AN ANGEL! The first
visit, he and his assistant both conquered my right shoulder desperately
needed surgery. Yet, several of my joints were showing that they were
"wearing". You know he NEVER TOOK A DIME, for that first visit. He told
me to save that money, and pay for a script he even wrote out for me for
some Toradol, or some anti-inflammatory. Then he told me once insurance
came in (he takes Medicare and their Advantage Plans) that we would be
seeing each other for some work. Boy, was he ever right! In late 2006, I
had been told my complete disability was given a "thumbs up". So, I
would get my SS benefits and most of all MEDICARE! That mean shoulder
surgery! So, in 2007, I actually had 7 surgeries on joints. I had MORE
THAN one falling apart. STILL, no one could put two plus two together. I
almost had honestly. I had already done so much research about all of
my issues, illness, ongoing symptoms, the early onset of it all, and I
really felt deep inside that I did have something like Lupus... etc. I
went to a brand new family doctor when he first got to town in about
late 2008/early 2009. After him seeing me several times over the course
of a few months, he done extensive blood work. They took 17 VIALS of
blood from me finally. He ran any and every type of test I think along
the lines of autoimmune illnesses that were possible. Thus I came up
with a "positive" on my ANA, and several of the other tests that gave me
a pointer to autoimmune/Lupus/RA /MCTD etc. ONe that piece of the
puzzle finally was put in. The rest is history.... many, many surgeries,
illnesses, and an extreme amount of pain later... here I am... I have
literally had to kick, scream, cry, make numerous visits, phone calls,
different doctors, tests, blood work, to get to doctors that could PUT
IT ALL TOGETHER! It took BOTH of us, taking things printed from online,
from our own research, from almost "telling" doctors what we "felt" was
wrong, to those who would listen and truly understand it all. So, no the
journey to where I can "still stand for now" today has been a
scratching, crawling, sliding down, and climbing up the mountain again
experience. Jim has and still is a total Angel. He had to be sent by
God, because I just do not see anyone on this Earth "staying" AND LOVING
ME as bad as things can be physically for me at times. HE ALSO can
relate because he deals with a great deal of chronic pain from lower
back issues that they think he may have been born with. But, I KNOW that
I am totally BLESSED, FORTUNATE TO HAVE HIM AND FAMILY, FRIENDS that
try their best to surround me with love, hope and faith. They put up
with my "fussing" and griping, and the times I am down and can't go and
do things... he is more than a "trooper", for sure. (I am going to put
another post and continue this one. It is getting too long... LOL!!!
Anyway, as far as the NOW situation, I FINALLY got to THINK things over yesterday morning, as I literally "hobble" around the driveway doing what really does NOT look like me walking, but I am STILL THERE, then watering my plants, and it HIT me after seeing my Orthopedic surgeon Friday what possibly is happening, and what possibly needs to be looked into. I have now became "broken" again, as I said to Jim... I had been "fixed" after getting back to TX. BUT, places that had not been messed up NOW ARE. like my hips, my thumb joints, my feet, my lower back.==, and elbows. My hips, elbow (L) and right elbow, along even with the left shoulder, have already either had a surgery or several rounds of injections over the years. It dawned on me HOW MUCH DAMAGE I had when I first GOT FIXED IN 2007/08 and even since then. BUT, now it has happened again. Those areas that have not been repaired or replaced are now in need of some help. Either injections, or some type of surgery, or replacement. It is the ONLY thing that makes total sense to me and Jim. Thus, I KNEW if I went back to my very FIRST ORTHOPEDIC surgeon last Friday, HE would be able to put new perspective on it all. My PCP, Pain doc... etc. have all been TOO close in it over this past 8 months or longer. They, like myself want to see it as an "all inclusive" Lupus, or some type of other AI illness thing. But, the pain is there, the evidence is there on tests, and my experience previously points right to the same. So, I did lots of research yesterday about doctors, my insurance and so forth. I made me a "list" of what is the WORST as far as pain etc NOW, and wrote it all down. Then I made a list of my doctors that I already have to see if THEY are the ones that need to possibly do the surgery (surgeries). Anyway, as far as the NOW situation, I FINALLY got to THINK things over yesterday morning, as I literally "hobble" around the driveway doing what really does NOT look like me walking, but I am STILL THERE, then watering my plants, and it HIT me after seeing my Orthopedic surgeon Friday what possibly is happening, and what possibly needs to be looked into. I have now became "broken" again, as I said to Jim... I had been "fixed" after getting back to TX. BUT, places that had not been messed up NOW ARE. like my hips, my thumb joints, my feet, my lower back.==, and elbows. My hips, elbow (L) and right elbow, along even with the left shoulder, have already either had a surgery or several rounds of injections over the years. It dawned on me HOW MUCH DAMAGE I had when I first GOT FIXED IN 2007/08 and even since then. BUT, now it has happened again. Those areas that have not been repaired or replaced are now in need of some help. Either injections, or some type of surgery, or replacement. It is the ONLY thing that makes total sense to me and Jim. Thus, I KNEW if I went back to my very FIRST ORTHOPEDIC surgeon last Friday, HE would be able to put new perspective on it all. My PCP, Pain doc... etc. have all been TOO close in it over this past 8 months or longer. They, like myself want to see it as an "all inclusive" Lupus, or some type of other AI illness thing. But, the pain is there, the evidence is there on tests, and my experience previously points right to the same. So, I did lots of research yesterday about doctors, my insurance and so forth. I made me a "list" of what is the WORST as far as pain etc NOW, and wrote it all down. Then I made a list of my doctors that I already have to see if THEY are the ones that need to possibly do the surgery (surgeries). Honestly, I have ONE Orthopedic specialist/genius that probably can do ALL OF IT, plus if it turned out my LOWER SPINE is the issue, he did my cervical spine also. He is the one that did my two most difficult surgeries, my neck and then the total reverse replacement shoulder on the right side. Those things are very "new" and cutting edge in many ways, as far as technology goes, and he KNOWS HIS STUFF! So, I THINK rather than going to several doctors due to having several issues, I am going to cross my fingers and that he still takes my insurance, and will see me. He had been splitting his time between two offices, thus I hope he is still at his original office next to the hospital where my pain doctor also is etc. I KNOW they take my insurance, and I have been in there numerous occasions. Thus, that makes sense to me. As far as a SURGEON, the man is a total GENIUS! As far as a "bed side manner", at first we had issues. He can be at times "egotistical" and of course you can't blame him BUT he also has issues with patients "knowing" things. HE DOES NOT like me going in there with all of my research etc... and then kind of "telling him" what I think is happening. Well, I can't blame him I guess. He is the one with the knowledge, the skill, the education, and I am the patient with my guesses, research, and known issues. So, at first we had a bit of a tiff honestly over me giving him more information that he really preferred to tell me instead. Yet, mmmmmmm, it turned out I was "right" more or less on both... so he and I began to suddenly get along better as far as bedside manner. I was told recently by me PCP that ALL SURGEONS can be HORSES butts! That is their nature!!! LOL!!! Which is NOT true. I have several that are the best ever at how they treat the patient as far as their personality. Many also LIKE A PATIENT to kind of be educated as to what might be happening. So, I am in the process of trying to decide where to start, and whether to go to him "can fix everything" shop, or do I find local foot docs, hip doc, elbow and hand doc. I know as far as the hand/wrist, and if my lower back is with issues, and even the elbows will need Dallas doctors anyway. I know local doctors as far as my toe thing (tarsus tunnel) probably, and IF the HIPS need something that can be done here by my orthopedic doctor I saw Friday. But, the other stuff is way too highly specialized and we do not have those specialists here yet. In between all of this, I DID MAKE my DENTIST appts. I have several teeth issues that NEED REPAIR! I know if ANY procedures will need to be done, where I am put to sleep, they PREFER things like that fixed first. So, fortunately I had already made two appointments for a week from this one to get most of that done. Alas... here we are ... and possibly here we go... I have ONE MAIN ISSUE... WELL I GUESS A COUPLE... COMING UP END OF THE YEAR AND MEDICARE for 2014! & what my MEDICARE ADVANTAGE INSURANCE PLAN will go up on, change, doctors that may not take it and so forth... so TIME is not on my side IF SURGERIES need to be done. I prefer any of that IF POSSIBLE done BEFORE A NEW MEDICARE YEAR. It is either that OR WE DO HAVE SOMETHING NEW that is going on and it is just not BEEN FOUND YET! And then if the first is not the case, then am I facing a wheelchair, cane, etc... that is not as bad as facing the DAILY REST OF MY LIFE... UNBELIEVABLE PAIN... I CAN FACE TEMPORARY ACUTE PAIN FROM SURGERY.. I know that will "end"... it is truly temporary, BUT LONG TERM CHRONIC PAIN... is an unknown from one minute to the next... so PRAY FOR ME!!! Please... that some of this IS THE ISSUE, AND IF SO, MUCH OF I CAN BE FIXED... :) we shall see what this week holds. I see my pain doctor tomorrow to refill my pump. I am going to ask him about going ahead with the lower spine medication injections. He already talked about them a couple of weeks ago... thus I am sure he will be game for that for sure...
Saturday, July 27, 2013
"Bearing" Your Soul - While Trying to "Bear" this Horrid Pain
NO, I am not completely deceased! But, I have certainly felt that way this past going on 4 weeks! Insanity, is the only word for it, besides however you can desribe, INTENSE,SEVERE, THROBBING, ACHING, AGONIZING, UNRELENTING, STABBING, SHARP - day, night... PAIN!!!! Not meaning to be any where "not standing in faith" BUT, I am sure questioning my Higher Power about why I am having to deal through this horrid journey. I thought about something that I had read a few weeks back. We talk about "acute" pain. Like having surgery pain, or breaking a leg pain, having a baby pain, kidney stones, and etc. That type of "acute" pain, is more or less "temporary". I realize when YOU are having the PAIN, it seems endless. Yet, you begin to see depending on what is going on relief fairly soon for the most part. Dealing with that type of pain, is NOT FUN BUT, you can look in the near future and see that it shall pass. You will heal a broken leg, or get over a surgery, rid yourself of the kidney stones, have your child in your arms... so that type of pain can be seen as going away soon.
When you are in CHRONIC PAIN, you do not "see" an end. Not one hear on this Earth usually. When it comes to many illnesses and conditions that cause chronic, gnawing, sometimes daily pain of some, lots, little ... you KNOW even if it disappears for a short while, you will have to GO THERE again. The "pain sabbatical" in most cases will end, and you know whether it be a day, a month, a year .... or whenever, unless by a cure, or medications that totally 100 percent work, or by the Divine Being, you are healed... that pain is inevitable.
That is what makes a chronic illness so horrible to deal with. It totally can take over your entire world, it reeks havoc with your body, your mind, your emotions, your soul... every day, every where... everyone in your life... just about any and everyone that is around, are affected by this relentless "stuff" that comes down upon us like a huge, black cloud, and weighs upon us, keeping us in the valleys of despair, rather than us standing atop our mountain, enjoying the world.
BUT, many of us do KNOW that someday RELIEF will come, permanently. When we "reach" that other portal, the other side, another dimension, heaven, or whatever you want to call it... if we are believers in things such as that, we can be "guaranteed" complete RELIEF!! through and PAST ETERNITY!!! So, if you think about "chronic" illness and pain in that light... then like "acute" pain... the chronic is in a way - going to be gone. I totally realize that in our hearts, we would much prefer that healing right now, so our quality of life comes back from wherever it goes when we are this ill.
I understand that this may sound a bit "depressive" or disenchanted, yet I do not mean it to be. I was just for my own sanity, trying to figure out a way to "process" all of my stupid questions, of why, how, when, where, .... why is this happening to myself and so many "good" people, when will be see relief, how did we manage to get "picked" for this not so great honor, and where do we go with it, when the weight of it all, is way too heavy for our own shoulders to bear......
I guess it depends on what kind of "well" we mean, as far as how the visit with my orthopedic surgeon went. The Good news, if you want to call it good, being stuck with a very LONG NEEDLE in FOUR JOINTS good, is that he injected both hips, and my elbows. They felt wonderful until the lidocaine began to wear off. Now they are SORE from all of the medication going in and it will take until about Monday before the real effects of the medication begin. But, Hey at least he did help in that manner. IT of course may NOT help, it may help for months, years, or for a day. That is the problem with those types of joint injections you just do not know how long it will last, or help at all. I have had wonderful luck with some over the many years I have had them, and some just stopped helping. Once the joint is too far damaged, then even the corticosteroid stops really doing much. Then he did X-ray my wrists, thumbs, and elbows. We knew what we would find. Damage worse now than a few years back. Both thumbs have really gotten bad, and my feet are bad also and ankles. I have seen the X-rays of my feet and fingers and they are just worn down, with little or no "cushion" cartilage left, thus the pain and inflammation comes from that, the Lupus and the RA. HE suggested a foot specialist to possibly do surgery on my big toes. I have "Tarpal tunnel" in them, which is much like carpal tunnel in the wrist. He said that may in itself help my feet a good deal. But, on my thumbs I maybe either looking at them having to be "fused", or better would be replaced, just like my knees and shoulder. Not what I wanted to hear for sure. BUT, I expected as much. He did say I have bursitis in my hips, and since we had injected them before, I may get some relief from it again. But, I may have to have them done either X-rays or CT scanned, because they themselves have not been done ..... if anything, years and years ago. So, I know things have definitely changed since then. IF it came to hip replacements, he could do those himself. He did my knees, and he does hips. But, when it comes to the more advanced things like total shoulders, fingers and so forth, then I have to see a specialist of course. I have NOT been TO SLEEP again almost all night for the 3rd night or so. Really longer than that, but these past two nights, I really have been up almost the entire night. So, that is not going to help the pain and soreness. Oh, and he looked at my lower spine CT and all of the EMG and Nerve Studies done last February. He said he seems to think much of this hip, butt, leg, lower back pain... IS my LOWER spine. Since my neck was such as mess, even though the CT did not show it (there has not been ONE CT or MRI ever done on me that was really "accurate". Every time they get in finally for surgery, it is a total wreck in there, and thy can't see it usually on MRI's or CT's.. But, he knows what the knees and shoulders are like inside, thus he is pretty sure my lumbar spine could also be a larger mess than it is showing. Especially me with the osteoporosis. I did not know that it can cause pain. I knew it did if I got a compression fracture or the like, but even it as severe as mine shows to be on the tests, could be causing some of my pain. Right now I am in the "waiting" game of my pain meds. I have about 10 minutes to go thank goodness. I am just about ready to scream. The pain in my lower back and hips is horrid right now. Anyway, he also felt like my Rheumatologist should take a look at all of these tests, X-rays, and try to change my medication. The RA and Lupus are definitely still causing damage to my joints. So, we need to try and slow it down if at all possible. Half jokingly I said something to Jim yesterday afternoon, that I would look stupid and not get much "exercise" having to be in a wheel chair circling the drive way in the mornings, rather than on my two feet, even if I am have to "drag" myself slowly, at least I am up and moving. But, honestly I am FEAR.... fear that if we do not get some of this damage slowed down and the pain more in control, that is where I am headed for! I just can't fathom having to be on a cane or in a wheel chair. It scares the hell out of me.
When you are in CHRONIC PAIN, you do not "see" an end. Not one hear on this Earth usually. When it comes to many illnesses and conditions that cause chronic, gnawing, sometimes daily pain of some, lots, little ... you KNOW even if it disappears for a short while, you will have to GO THERE again. The "pain sabbatical" in most cases will end, and you know whether it be a day, a month, a year .... or whenever, unless by a cure, or medications that totally 100 percent work, or by the Divine Being, you are healed... that pain is inevitable.
That is what makes a chronic illness so horrible to deal with. It totally can take over your entire world, it reeks havoc with your body, your mind, your emotions, your soul... every day, every where... everyone in your life... just about any and everyone that is around, are affected by this relentless "stuff" that comes down upon us like a huge, black cloud, and weighs upon us, keeping us in the valleys of despair, rather than us standing atop our mountain, enjoying the world.
BUT, many of us do KNOW that someday RELIEF will come, permanently. When we "reach" that other portal, the other side, another dimension, heaven, or whatever you want to call it... if we are believers in things such as that, we can be "guaranteed" complete RELIEF!! through and PAST ETERNITY!!! So, if you think about "chronic" illness and pain in that light... then like "acute" pain... the chronic is in a way - going to be gone. I totally realize that in our hearts, we would much prefer that healing right now, so our quality of life comes back from wherever it goes when we are this ill.
I understand that this may sound a bit "depressive" or disenchanted, yet I do not mean it to be. I was just for my own sanity, trying to figure out a way to "process" all of my stupid questions, of why, how, when, where, .... why is this happening to myself and so many "good" people, when will be see relief, how did we manage to get "picked" for this not so great honor, and where do we go with it, when the weight of it all, is way too heavy for our own shoulders to bear......
I guess it depends on what kind of "well" we mean, as far as how the visit with my orthopedic surgeon went. The Good news, if you want to call it good, being stuck with a very LONG NEEDLE in FOUR JOINTS good, is that he injected both hips, and my elbows. They felt wonderful until the lidocaine began to wear off. Now they are SORE from all of the medication going in and it will take until about Monday before the real effects of the medication begin. But, Hey at least he did help in that manner. IT of course may NOT help, it may help for months, years, or for a day. That is the problem with those types of joint injections you just do not know how long it will last, or help at all. I have had wonderful luck with some over the many years I have had them, and some just stopped helping. Once the joint is too far damaged, then even the corticosteroid stops really doing much. Then he did X-ray my wrists, thumbs, and elbows. We knew what we would find. Damage worse now than a few years back. Both thumbs have really gotten bad, and my feet are bad also and ankles. I have seen the X-rays of my feet and fingers and they are just worn down, with little or no "cushion" cartilage left, thus the pain and inflammation comes from that, the Lupus and the RA. HE suggested a foot specialist to possibly do surgery on my big toes. I have "Tarpal tunnel" in them, which is much like carpal tunnel in the wrist. He said that may in itself help my feet a good deal. But, on my thumbs I maybe either looking at them having to be "fused", or better would be replaced, just like my knees and shoulder. Not what I wanted to hear for sure. BUT, I expected as much. He did say I have bursitis in my hips, and since we had injected them before, I may get some relief from it again. But, I may have to have them done either X-rays or CT scanned, because they themselves have not been done ..... if anything, years and years ago. So, I know things have definitely changed since then. IF it came to hip replacements, he could do those himself. He did my knees, and he does hips. But, when it comes to the more advanced things like total shoulders, fingers and so forth, then I have to see a specialist of course. I have NOT been TO SLEEP again almost all night for the 3rd night or so. Really longer than that, but these past two nights, I really have been up almost the entire night. So, that is not going to help the pain and soreness. Oh, and he looked at my lower spine CT and all of the EMG and Nerve Studies done last February. He said he seems to think much of this hip, butt, leg, lower back pain... IS my LOWER spine. Since my neck was such as mess, even though the CT did not show it (there has not been ONE CT or MRI ever done on me that was really "accurate". Every time they get in finally for surgery, it is a total wreck in there, and thy can't see it usually on MRI's or CT's.. But, he knows what the knees and shoulders are like inside, thus he is pretty sure my lumbar spine could also be a larger mess than it is showing. Especially me with the osteoporosis. I did not know that it can cause pain. I knew it did if I got a compression fracture or the like, but even it as severe as mine shows to be on the tests, could be causing some of my pain. Right now I am in the "waiting" game of my pain meds. I have about 10 minutes to go thank goodness. I am just about ready to scream. The pain in my lower back and hips is horrid right now. Anyway, he also felt like my Rheumatologist should take a look at all of these tests, X-rays, and try to change my medication. The RA and Lupus are definitely still causing damage to my joints. So, we need to try and slow it down if at all possible. Half jokingly I said something to Jim yesterday afternoon, that I would look stupid and not get much "exercise" having to be in a wheel chair circling the drive way in the mornings, rather than on my two feet, even if I am have to "drag" myself slowly, at least I am up and moving. But, honestly I am FEAR.... fear that if we do not get some of this damage slowed down and the pain more in control, that is where I am headed for! I just can't fathom having to be on a cane or in a wheel chair. It scares the hell out of me.
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