Now I am sure you are wondering what the hell I have put this up for. Unless you've been to my FB page, or have seen the latest "venture" that the IFAA (International Foundation For Autoimmune Arthritis), about now you are scratching your head figuring what else I could possibly have my fingers involved in now.
Well, the story began when I "found" Tiffany the Founder and CEO of what came from a bracelet, made with a bit of leather, a belt buckle, and was a "movement" until now they stand proud and tall as one the instrumental foundations of Patient Centered Research in Autoimmune Arthritic Illnesses. So, what does that mean to me, and then of course what does that mean to yourself? That is a very long answer that shall become clarified in the days to come, and in my book to come also. A portion of my book, will be about my relatively "short time" I've been with a Foundation, that I have watched make almost impossible changes in the way others, including doctors, researchers, patients, and people from around the globe sit up, take notice, and SEE the REAL issues that "we" the patients deal with daily.
None of our lives are "daily".... or the events in them are not for sure. We may get up in the morning, much more slowly than anyone else, "walk" some of the stiffness out. Next may come a cup of coffee, that it takes all of your energy in both hands to pour it in a cup. I've not truly been able to get a "grip" on the entire next few months coming up and all that is involved, until last night.
After I have spent the last 6 days at least arguing over insurance, my biologic medication, the infusion center, driving my doctors office crazy, along with myself, it hit me square in the face, that in 6 WEEKS I will be going to Washington DC! Here I have been wanting to do this all my life. It has been a dream, for me to stand in front of the White House, hopefully not speaking to just myself, but someone even if people just coming to be those to take a look at the White House and happen to "hear" my story. So long, I've thought about what I would say, how I would say it, and what I would want to get across to the officials in those buildings. It is almost like trying to reach the "Pope" or a movie star, or anyone that is in any type of place of "authority". Your chances of really getting to even shake their hand might be slim to none. Much less get their attention long enough to gripe about your illness, what the government is NOT doing to help it, and what they are DOING WRONG to make it worse! My thought has been unless you have lots of money to "slide" under the door of any one of our local, state or federal officials, you might as well, jump in the back of a truck, while it goes 30 miles an hour, down a dirt road and spit... And when the spit lands back on you mixed with dirt... that is just about how much you would get while the officials in Congress scrape you off of them like they scrape mud off their shoes.
This from here down was written this morning... I am have a very difficult time between what I feel are flares of RA/Lupus, and way overly stressed... I am a total mess, mentally, physically and emotionally... I am wondering why I even try anymore... it always turns out to be a mess for me, rather than a help.... thus the reasoning behind this post.. (I also began posting the bottom portion of this on FB and changed my mind. I decided to post it here, and just put a link in to FB...
LOL!!!!
I have been seeing the new "T-Shirt" on their Foundation's Website and
wondered about it. When I was filling out the registration yesterday at
the end it asked for your "T-Shirt" size! That is when I got the hint we
would be receiving one!
Honestly, over the past week I've been really struggling with all of
this. I have actually began a blog post that I am still working on about
my own internal, some physical, but more "mental" revelations about how
quickly all of the things that are happening in my life right now are
coming on me so very fast! Much of it "good" things, but entangled in
the "good" are some challenges that I am definitely struggling with. I
have just taken an immense "slide down through the rocky side" of my
"mountain" of autoimmune illnesses right at this moment. Since I've not
gotten the Rituxan infusions as I should have weeks ago, all of my RA
symptoms have hit me like I just ran into a brick wall. I know I am in
not only a RA flare of sorts due to the part where the bottoms of my
feet hurt, especially when I first wake up and try to put my feet on the
floor, to the stiffness and pain in my toes, thumbs, ankles and
fingers, which is making trying to type a nightmare. it is not that it
is so much "pain", I do have that, but it affects my "ability" to type. I
hit wrong keys, I am constantly correcting myself, or having to back up
because I've spelled something incorrectly as I typed it, and so on.
Then it the "mental" true "brain fog" that this time has me terribly
aware that these illnesses are takng their toll on my body in several
ways. My ability to type issues are also because of the fog. I tend to
try and spell words, or type normal, everyday words, and cannot remember
them, and have to stop and think about what I am trying to say, or
again due to the stiffness it seems my fingers are constantly on the
wrong keys. And I am at the moment "brain and physically "fatigued". I
feel as if I have mentally been in a prize fight. It is just almost
painful to think. I want to just scream I can't take anymore!!!!!! I AM
SO UPSET about NOT GETTING MY RITUXAN, that I could scream! It is one of
the most frustrating situations for me. That is the ONE biologic, that
has "worked" more for me than any of the others. There is just so much
going on right now I feel like I am on a spinning top, and each day it
goes faster and faster. I am battling the insurance even over just
getting the Enbrel. I found out it is the ONE biologic of TWO that
Humana will pay for. Yet, I still have to Jump through every hoop you
can name to even be on that. I even got the prior authorization myself
and faxed it to my doctors office myself to make sure they had it. And
now I've called the "specialty pharmacy" two days in a row, they see the
script and yesterday the woman on the phone says, "well, it appears
maybe they got the "prior authorization form" but they are requesting
"more" information from your doctor??? What the hell more information do
they need? I've been going in this circle with them now for at least 4
years and each year it gets worse, rather than better. When I first
began all of this autoimmune illnesses whirlwind, Humana, rarely
questioned anything. For the most part, even all the surgeries I went
through even 8 in ONE YEAR, there was no hassle. Many of them were
performed and the insurance never even need a "prior" request on those.
Then it began about two years ago. I began to notice my doctors would
try to send me to a specialist, and the specialist would not be a
"preferred provider"... and I had not had that before. Then they would
"piss and moan" over certain medications with these "prior
authorization" forms... not many but a few ... year before last, it was
SO BAD that the first part of the year January and February, they made
me get a "PA"(Prior authorization" on JUST ABOUT every medication I had
been on for 5 years!!!! Heart med, Muscle spasm meds, you name it, they
wanted this "PA" form for it. I argued with them and the answer I ALWAYS
RECEIVED FROM THE INSURANCE WAS "it it MEDICARE(the government) MADE
ALL THESE CHANGES" thus "they" the insurance company HAD TO request
these even on medications for my heart, blood pressure, stomach and so
on. That was the most asinine thing I had ever heard of. I spent hours
and hours and untold hours getting that nonsense stopped! My doctors of
course were all annoyed, and I don't blame them! They "put a patient"
with high blood pressure, or stomach issues on medications, they are on
them for years, then all of a sudden here comes the very insurance that
paid for them asking for the doctor to fill out forms? In the first
place the doctors do NOT have time for this. In the 2nd place it as
ridiculous! Well, all of that finally went away I think. Come last year I
noticed ONLY if it was a medication that was new to the patient and for
the most part a "specialty" med they would then request a "PA" form.
Yet, even then, the doctor filled it out, faxed it in, and I had my
medicine quickly, there was no wait, there was no 72 hour "review"...
and I certainly did not HAVE to wait 10 DAYS or more for my
"prescription" to be processed once all of the other stupid paperwork
was done!!! To add insult to injury, then, me not really realizing that
Humana WILL NOT PAY for any "specialty" biologic medication (even though
on their website they will "price" it to you at your local pharmacies",
and I had checked prior to all of this and knew my local Wal-Greens did
carry it and they had a specialty department that did the paperwork and
then would let the pharmacist know when it was all done and when he
could fill the script. Well, guess what? Then I come to find out that
Humana will NOT pay for the local pharmacies to fill these medications,
it MUST GO through Humana's own "Right Sour Specialty Pharmacy"... so
guess what that means, more delay, and it was delayed even further
because the "local pharmacist" could NOT understand I HAD to have the
prescription faxed over to Right Source!! I asked 5 different times to
"fax" it to Right Source and kept continued to try and "run it through"
to the insurance! And of course the insurance kept "denying" it!!! It
he done it a hundred times, Humana is NOT going to pay for it, unless it
comes from "their own" Specialty pharmacy! Wonder where the kickbacks
etc go on that one?????? Of course FINALLY I honestly think my doctors
nurse faxed the script herself to the correct place Monday morning. Then
she gave me the fax number their and reminded me that she knew a "prior
authorization" form would need to be sent to her and filled out, then
sent back to Right Source! SO, I was lied to because Wal-Greens told me
they had gotten the "PA" form. If they had then there would not be a
call for another one I was told at Right Source, because it would have
been in Humana's website, thus they would not NEED one, the one would
suffice!!! So, let's start the phone calls and the whirlwind again! Now I
had to "dig" through Humana's website (which I already knew the drill
on this one) find that form, get online and fax that form to her (the
nurse) at the doctors office. Because if I had WAITED for then
"pharmacy" to request it, that might delay it for weeks because that
mean the doctors office would have to dig it out, fill it out, and send
it to Humana for approval. So rather than jump through another 25 steps,
I tried to save a few and sent it to her myself. Which I am not sure
even made a difference. For two days I continue to get the same
response. Well, it looks like we are "waiting" for something... in fact
yesterday's phone call to "Right Source" is what led me down the track
to even when we receive all of the information it will take "72 hours"
for review? What more is there to "review" when you have everything but
it signed in blood and stamped by the President stating I need this
medication!? And it just continues to float around and around within the
spinning, ever spinning, world of what we should NOT have to go
through! Now, with all of this, plus I KNOW without a doubt, it is not
long, until the Sjögren's has taken everyone of my teeth and crumbled
them to nothing. I have at least 4 right now, that are just "pieces" of
teeth. I barely have any jaw or chewing teeth at all. And the ones up
front are so fragile I fear biting into anything... I have my 4 bottom
front ones that "so far" have not shown or I've "felt" them having
issues. But that is just the problem. They can "seem" fine one day, and
the next you are eating, and suddenly there is a "space" where part of a
tooth was! No Kidding! It is insane. That is usually how it happens for
me. And it does not have to be something difficult to chew and so on...
just normal eating, and then my tongue will suddenly "know" something
is missing... sure enough an entire side, or back of a tooth will be
totally gone! I have two of my very back jaw teeth, one of which he
could not even "fill it" permanently because the cavity was so deep, he
said I would not be able to withstand the pain because of it being so
near the root. So, he put some of the "temporary" type of filling in
their but it has already itself became partially gone... and the one
just like it began hurting and feeling "odd" yesterday, thus I am almost
sure it will have to go soon also. Right now I would bet I have 6 that
either need to be pulled or slightly a possibility a filling may help
them. But since it feels as if an entire side of it is gone, I am
betting all of them but possibly one have to be extracted. That would
have me literally with maybe 3 jaw teeth in the top, and my 6 or 7 top
and bottom front teeth... and those in the top are just "patched"
together... they are trying everything to keep those in as long as
possible.... So, I ONLY "saving" grace in the matter of my teeth is that
there is a possibility due to all of this damage being from "Sjögren's.
the insurance MAY pay for a specialist. In fact one of the "nicer"
women at Humana even gave me the name of a doctor who is more of an oral
surgeon that might be able to "screw" the teeth into my jaw bone
(seeing that my jaw is not totally messed up with the osteoporosis)
because "dentures" are NOT the answer for anyone with Sjögrens'. Due to
no saliva or very little those will not "hold" properly in the mouth. I
just am not able to fathom the amount of pain, expense, and what I will
have to go through to have these teeth "fixed" or something done with
them. Hell a "root canal" and crown is over $3,000.00, much less that
kind of thing to be done! So, within the spinning web of ALL that is so
amazing, and yes my birthday is Saturday... all of the horrid nightmare
of bad stuff keep putting a damper on the good things coming my way. I
am ready to throw in the towel... and just sit on the sofa, and forget
it all. I've fought this battle way too long, and way too hard... and I
am reaching the place that that mountain top is way too high for me
anymore... I don't know where to turn... and I certainly really do not
want to go anywhere over the weekend... I know it is planned to go, but
between money, and the operation, and me not feeling well, I am just not
in the state of mind to go anywhere right now. Hell i need to go
grocery shopping and I'm having a huge struggle in trying to convince
myself to go and do that. I am just tired of it all.....
LOL!!!! I have been seeing the new "T-Shirt" on their Foundation's Website and wondered about it. When I was filling out the registration yesterday at the end it asked for your "T-Shirt" size! That is when I got the hint we would be receiving one! Honestly, over the past week I've been really struggling with all of this. I have actually began a blog post that I am still working on about my own internal, some physical, but more "mental" revelations about how quickly all of the things that are happening in my life right now are coming on me so very fast! Much of it "good" things, but entangled in the "good" are some challenges that I am definitely struggling with. I have just taken an immense "slide down through the rocky side" of my "mountain" of autoimmune illnesses right at this moment. Since I've not gotten the Rituxan infusions as I should have weeks ago, all of my RA symptoms have hit me like I just ran into a brick wall. I know I am in not only a RA flare of sorts due to the part where the bottoms of my feet hurt, especially when I first wake up and try to put my feet on the floor, to the stiffness and pain in my toes, thumbs, ankles and fingers, which is making trying to type a nightmare. it is not that it is so much "pain", I do have that, but it affects my "ability" to type. I hit wrong keys, I am constantly correcting myself, or having to back up because I've spelled something incorrectly as I typed it, and so on. Then it the "mental" true "brain fog" that this time has me terribly aware that these illnesses are takng their toll on my body in several ways. My ability to type issues are also because of the fog. I tend to try and spell words, or type normal, everyday words, and cannot remember them, and have to stop and think about what I am trying to say, or again due to the stiffness it seems my fingers are constantly on the wrong keys. And I am at the moment "brain and physically "fatigued". I feel as if I have mentally been in a prize fight. It is just almost painful to think. I want to just scream I can't take anymore!!!!!! I AM SO UPSET about NOT GETTING MY RITUXAN, that I could scream! It is one of the most frustrating situations for me. That is the ONE biologic, that has "worked" more for me than any of the others. There is just so much going on right now I feel like I am on a spinning top, and each day it goes faster and faster. I am battling the insurance even over just getting the Enbrel. I found out it is the ONE biologic of TWO that Humana will pay for. Yet, I still have to Jump through every hoop you can name to even be on that. I even got the prior authorization myself and faxed it to my doctors office myself to make sure they had it. And now I've called the "specialty pharmacy" two days in a row, they see the script and yesterday the woman on the phone says, "well, it appears maybe they got the "prior authorization form" but they are requesting "more" information from your doctor??? What the hell more information do they need? I've been going in this circle with them now for at least 4 years and each year it gets worse, rather than better. When I first began all of this autoimmune illnesses whirlwind, Humana, rarely questioned anything. For the most part, even all the surgeries I went through even 8 in ONE YEAR, there was no hassle. Many of them were performed and the insurance never even need a "prior" request on those. Then it began about two years ago. I began to notice my doctors would try to send me to a specialist, and the specialist would not be a "preferred provider"... and I had not had that before. Then they would "piss and moan" over certain medications with these "prior authorization" forms... not many but a few ... year before last, it was SO BAD that the first part of the year January and February, they made me get a "PA"(Prior authorization" on JUST ABOUT every medication I had been on for 5 years!!!! Heart med, Muscle spasm meds, you name it, they wanted this "PA" form for it. I argued with them and the answer I ALWAYS RECEIVED FROM THE INSURANCE WAS "it it MEDICARE(the government) MADE ALL THESE CHANGES" thus "they" the insurance company HAD TO request these even on medications for my heart, blood pressure, stomach and so on. That was the most asinine thing I had ever heard of. I spent hours and hours and untold hours getting that nonsense stopped! My doctors of course were all annoyed, and I don't blame them! They "put a patient" with high blood pressure, or stomach issues on medications, they are on them for years, then all of a sudden here comes the very insurance that paid for them asking for the doctor to fill out forms? In the first place the doctors do NOT have time for this. In the 2nd place it as ridiculous! Well, all of that finally went away I think. Come last year I noticed ONLY if it was a medication that was new to the patient and for the most part a "specialty" med they would then request a "PA" form. Yet, even then, the doctor filled it out, faxed it in, and I had my medicine quickly, there was no wait, there was no 72 hour "review"... and I certainly did not HAVE to wait 10 DAYS or more for my "prescription" to be processed once all of the other stupid paperwork was done!!! To add insult to injury, then, me not really realizing that Humana WILL NOT PAY for any "specialty" biologic medication (even though on their website they will "price" it to you at your local pharmacies", and I had checked prior to all of this and knew my local Wal-Greens did carry it and they had a specialty department that did the paperwork and then would let the pharmacist know when it was all done and when he could fill the script. Well, guess what? Then I come to find out that Humana will NOT pay for the local pharmacies to fill these medications, it MUST GO through Humana's own "Right Sour Specialty Pharmacy"... so guess what that means, more delay, and it was delayed even further because the "local pharmacist" could NOT understand I HAD to have the prescription faxed over to Right Source!! I asked 5 different times to "fax" it to Right Source and kept continued to try and "run it through" to the insurance! And of course the insurance kept "denying" it!!! It he done it a hundred times, Humana is NOT going to pay for it, unless it comes from "their own" Specialty pharmacy! Wonder where the kickbacks etc go on that one?????? Of course FINALLY I honestly think my doctors nurse faxed the script herself to the correct place Monday morning. Then she gave me the fax number their and reminded me that she knew a "prior authorization" form would need to be sent to her and filled out, then sent back to Right Source! SO, I was lied to because Wal-Greens told me they had gotten the "PA" form. If they had then there would not be a call for another one I was told at Right Source, because it would have been in Humana's website, thus they would not NEED one, the one would suffice!!! So, let's start the phone calls and the whirlwind again! Now I had to "dig" through Humana's website (which I already knew the drill on this one) find that form, get online and fax that form to her (the nurse) at the doctors office. Because if I had WAITED for then "pharmacy" to request it, that might delay it for weeks because that mean the doctors office would have to dig it out, fill it out, and send it to Humana for approval. So rather than jump through another 25 steps, I tried to save a few and sent it to her myself. Which I am not sure even made a difference. For two days I continue to get the same response. Well, it looks like we are "waiting" for something... in fact yesterday's phone call to "Right Source" is what led me down the track to even when we receive all of the information it will take "72 hours" for review? What more is there to "review" when you have everything but it signed in blood and stamped by the President stating I need this medication!? And it just continues to float around and around within the spinning, ever spinning, world of what we should NOT have to go through! Now, with all of this, plus I KNOW without a doubt, it is not long, until the Sjögren's has taken everyone of my teeth and crumbled them to nothing. I have at least 4 right now, that are just "pieces" of teeth. I barely have any jaw or chewing teeth at all. And the ones up front are so fragile I fear biting into anything... I have my 4 bottom front ones that "so far" have not shown or I've "felt" them having issues. But that is just the problem. They can "seem" fine one day, and the next you are eating, and suddenly there is a "space" where part of a tooth was! No Kidding! It is insane. That is usually how it happens for me. And it does not have to be something difficult to chew and so on... just normal eating, and then my tongue will suddenly "know" something is missing... sure enough an entire side, or back of a tooth will be totally gone! I have two of my very back jaw teeth, one of which he could not even "fill it" permanently because the cavity was so deep, he said I would not be able to withstand the pain because of it being so near the root. So, he put some of the "temporary" type of filling in their but it has already itself became partially gone... and the one just like it began hurting and feeling "odd" yesterday, thus I am almost sure it will have to go soon also. Right now I would bet I have 6 that either need to be pulled or slightly a possibility a filling may help them. But since it feels as if an entire side of it is gone, I am betting all of them but possibly one have to be extracted. That would have me literally with maybe 3 jaw teeth in the top, and my 6 or 7 top and bottom front teeth... and those in the top are just "patched" together... they are trying everything to keep those in as long as possible.... So, I ONLY "saving" grace in the matter of my teeth is that there is a possibility due to all of this damage being from "Sjögren's. the insurance MAY pay for a specialist. In fact one of the "nicer" women at Humana even gave me the name of a doctor who is more of an oral surgeon that might be able to "screw" the teeth into my jaw bone (seeing that my jaw is not totally messed up with the osteoporosis) because "dentures" are NOT the answer for anyone with Sjögrens'. Due to no saliva or very little those will not "hold" properly in the mouth. I just am not able to fathom the amount of pain, expense, and what I will have to go through to have these teeth "fixed" or something done with them. Hell a "root canal" and crown is over $3,000.00, much less that kind of thing to be done! So, within the spinning web of ALL that is so amazing, and yes my birthday is Saturday... all of the horrid nightmare of bad stuff keep putting a damper on the good things coming my way. I am ready to throw in the towel... and just sit on the sofa, and forget it all. I've fought this battle way too long, and way too hard... and I am reaching the place that that mountain top is way too high for me anymore... I don't know where to turn... and I certainly really do not want to go anywhere over the weekend... I know it is planned to go, but between money, and the operation, and me not feeling well, I am just not in the state of mind to go anywhere right now. Hell i need to go grocery shopping and I'm having a huge struggle in trying to convince myself to go and do that. I am just tired of it all.....
