An Autoimmune Arthritic Systemic Life©

Monday, August 19, 2013

It Continues to Get WORSE for Legitimate Pain Patients!

http://hometestingblog.testcountry.com/?p=25926

This article is just one more example of how the "few" out there doing WRONG can make legitimate people's lives a living hell. I have seen more stories over the weekend of the very circumstance we are dealing with. IT continues to baffle the hell out of me though, as to WHY a family doctor, who has KNOWN you family for 5 or 6 YEARS... would just NOT SPEAK! No explanation, nothing... not a phone call, nothing but a "form" letter, that he probably did not even sign or read, just sent out like you were some stranger off the street. It is insanity! I know "they" as doctors have their own "reasons" as to why they handle things like they do. I have already went over all of that in my head. BUT!!! IT STILL does NOT make it RIGHT! AND it is the most unprofessional way to handle a patient I have ever seen. Now, due to him being my personal doctor and my Mom's, plus several others I know here in town, WE ALL feel very UNCOMFORTABLE GOING to him... yet after you are an ESTABLISHED patient... that has such a very long medical history with so many complications as I do, thinking about even trying to get another doctor to UNDERSTAND all of my ILLNESSES and treatments... is crazy! Sure they can, but who in their right mind wants to take what "is working", and try to make such a huge change???
If I were a patient that had the "usual" visits. Flu, normal things you go for, blood pressure, physicals, and the occasional stuff, going to a new physician is not that difficult. BUT, when you have SCORES OF symptoms, due to SEVERAL CHRONIC illnesses, trying to "train" (for lack of a better term) a new doctor is a job! It would take a new PCP months and months to even READ MY RECORDS! Much less understand ALL that my current PCP does for me... So, that is another huge issue.... This could be so different if it would have been handled properly. Now I am left in a lurch not really knowing how to handle it all. EVERYONE in that office has acted STRANGE EVEN before the letter went out... to my entire family... and we "felt" something wrong, but did not know what.... and how can I look him in the eye (I am supposed to see him for a follow up on Lupus next week) and in fact have blood work done tomorrow there at the office. If I don't have the myoglobin checked he probably won't refill my muscle relaxers.. see so it runs into huge issues with my own health.

Here is another article that appeared this weekend.... same thing

http://americannewsreport.com/nationalpainreport/my-story-pain-clinics-are-money-mills-8821277.html

Wednesday, August 14, 2013

Updating how the "Wolf" can "eat you alive" when it wants to....

I am not sure whether to laugh, cry, scream, be quiet, fade away, burn brightly or.... to just fall off the mountain top... and say to hell with it all. I guess I CAN FATHOM that others have just as MANY STUPID "Life" issues as myself and my family do. I have open eyes and an open heart to so many that are out here suffering in one way, the other... or several! Health issues, money issues, raising kids, jobs or lack of them, the rage, the horror, the outlandish behavior of other so-called "humans"... all frightening as have ever been. Mother Nature has put a "hurtin' on so many across our own nation, and furthermore across the world, even just trying to "digest" all of that is almost impossible. Droughts, fires, severe flooding, pests of all kinds, tornado's, hurricane's, high winds, hail the size of baseballs... I mean everywhere you turn, either some home is falling in a "sink hole", or things are so bone dry, all you see is dust. Then you look at another state, and they are so totally enveloped in floods that cars are floating down main street USA! How insane is that? Then the fires... it is just so difficult to watch, thousands upon thousands of acres of land burn up, and people lose everything, even their lives. Then we have the latest of a barrage of "transportation" evils. Trains, planes, huge buses full of people, all wrecking, reeking havoc for hundreds across the world. It seems every day you turn on the news, or read it online to see once again, yet another bus, train, plane, or even a 50 car pileup has completely blocked off major highways everywhere. That is just a "few" of our MANY, MANY dire straits of issues that as plan American folks, and Plain World people that we deal with daily. The pain, the suffering, lack of clean water, of food, of places to live, of money, of medications (how the HELL can WE as the "great" nation we are supposed to be running OUT OF SOME MEDICATIONS???? I am sorry but that sounds absolutely ludicrous. Look HOW MANY Pharmaceutical companies we have, and a pharmacy on EVERY CORNER even on all 4 corners in many towns, yet we CANNOT KEEP A INVENTORY OF MEDICATIONS WE NEED???? NO, more like if they cannot MAKE A FORTUNE ON IT, they "CUT" OFF THE SUPPLY... in other words , GREED!!!!! This is not including the RIDICULOUS RED TAPE MESS, our Insurance companies, hospitals, clinics and doctors are in... along "in bed" with the pharmaceutical companies, that bunch in Congress, that have their own agenda and the "lobbyists" that contribute to fuel the GREED of this nation! Every time I think about HOW SOME FOOL BEHIND A DESK can TELL ME WHAT I NEED MEDICALLY AND DO NOT NEED MEDICALLY OVER MY OWN PHYSICIAN it BURNS ME TO NO END!!! What the hell do we have physicians for, if some pencil pushing, not caring if you die, person, that does NOT even know a medical term or what the name of a medication or procedure is, much less what it is for, tell US and our DOCTORS what to do??? IT is one sad damned day in America, that is what it is!!!! OF course, then you have the entire other side, of those doctors, hospitals, and so forth that are just as screwed up as the people behind those desks. Never in my 53 years here have I ever seen a bunch of incompetent jack asses trying to half do a job that they have no clue about. I am not A GENIUS BUT!!! I can tell you that myself, along with MANY, MANY of US know more about the world of MEDICINE AND HEALTH, more than some of the nurses, and others that are supposed to be "taking care" of us!!! Talk about scary!!! It is down right a nightmare if you think about it.... Now, I am NOT one normally to be down and out about everything, but this past 8 plus weeks for myself and my family along with a few of my good friends have SUFFERED WAY TOO MUCH... and yes I QUESTION WHY???? I try NOT to question things, and to realize life is what it is going to be. We have SOME CONTROL, but many times we have very LITTLE OR NO CONTROL, when it comes to life and it's good, ugly, nice, down right hellish, and indifferent. I have literally spent HOURS AND HOURS ARGUING WITH People because THEY DO NOT DO THEIR JOBS! Sending myself, or my Mom bills that they DO NOT file RIGHT WITH THE INSURANCE COMPANIES, then EXPECT US TO PAY! That is bull! File it right, you WILL GET PAID! But, I do not think there has been ONE CLAIM THIS YEAR, THAT HAS BEEN FILED PROPERLY! Every doctors office, the hospital, the pharmacy, you name it, has filed something wrong, then tries to collect from us!!! If they would just do their jobs RIGHT, then it would take SO MUCH STRESS OFF OF US!!! IF I WANT TO FILE MY OWN INSURANCE THEN PAY ME AND I WILL DO IT RIGHT THE FIRST TIME!!!

I do question the entire process of "why BAD things have to happen to the "best" folks???? It makes no sense to me these days. The greedy, the ones that could care less about their fellow man, that treat others like trash, that live their lives in a gutter so to speak, seem to "breeze" by... Only to have those of us who, DO GIVE a damned about others, we try and treat people with kindness and compassion, we do NOT live our lives as if we were the only people on the planet, we work, pay our bills, and do all of the "right" things, seem to be hit the hardest with illness, pain, suffering, stressful life situations, and we do NOT DESERVE IT! A dear friend of mine is going through a horrible time fighting the big "C" word again. Bless her heart, she already did that at a very young age, back when we were just youngsters, and she won the battle. NOW, here she is years later, battling the monster again. She is the kindest, sweetest, compassionate, gentle soul, that takes care of her family in every way... and she just does NOT deserve to go through this again... no way, no how.... yet here she is having to once again walk through the hot coals of chemotherapy, and yet still trying to put on a happy face and work! It breaks my heart honestly. I also had a girl I have known since I also was in High School that I saw about 3 weeks ago. Her family and my family were close during those years when we were kids. Our Dad's worked together, we went on weekend trips to the lake together, they hunted deer together... and now her Mom is going blind from macular degeneration... and if that is not bad enough, the woman, who is several years younger than me, has Parkinson's! We are talking about someone in their mid-40's!!!! What makes that even worse, and I did not know it until I saw here a couple of weeks ago, she lost her husband last year to an aneurysm, as they were driving down the highway, he died right there beside her in the passenger seat!!!! Talk about wondering why?? Her Dad already has Alzheimer's, and honestly I think he may be so bad he is either in a nursing home, or he may have passed away, but I was so taken aback by all of the other things she told me, that I felt uneasy even asking. Even though this is a small town, sometimes since I don't get out all the much, I miss out own things going on to others.

Pieces of me feel like they are just "floating away" these days. I feel as if the very "substance" of my own heart and soul that I have walked in, with faith as much as I can, has just taken another road, journeyed away from me... and pieces of that are also my "voice" that has always given me the "right words" to write... it is like that "voice" has been silenced by too much of life's horrible drama. I so looked forward to possibly putting out my 3rd book in a year or so, but now I question whether that will EVER COME TO PASS AT ALL. I truly felt that I had SOMETHING TO GIVE TO OTHERS, through MY WORDS FROM MY HEART, yet somewhere down the line, "my" plans have been altered... so I am just not myself these days... I feel as if I am SOME OTHER person... I do not even recognize myself anymore... not so much in a "physical" sense, but in a sense of "the core center of who I was"... that seems to have "left the building" as that old adage goes.... much like "Elvis"... who I was, seems to not be who I am now... I can "blame" it on illness, pain, drama, life's little nightmares that can change your entire outlook in the blink of an eye".... some good, yet for me, I see it as not good at all... where it that writer, that "creative" entity... I miss her... I miss "Me"... I spend more time trying to "get well" that I spend being "well"....

I have FINALLY my Rheumatologist's Appointment this morning!!! HOOORAY!!! I pray he can help, and he usually does. I have missed not seeing him in over 6 months, so I cannot tell you how LONG MY LIST IS FOR HIM!!! There is LOTS AND LOTS OF FLOOD WATERS that have flown under my bridge since he saw me last. I DID email him some of my issues, and some information last week. I felt the MORE he knows BEFORE I get there, the more fruitful our appointment will be. Alas, I just hope we do have enough time to discuss all that is happening. I believe from an email I received back from him last week, I will be going on an infusion of Rituxan rather than the Humira. Or I gather I will stop the Humira, and only take the Rituxan. I pray it helps to reduce all of this pain, swelling, and mainly damage that is happening from the RA!!! Then I have lots of other things like those two other osteoporosis medications I found out about last week, I want to discuss. If I can take them, and have a chance of doing anything to remotely halt my bones from growing any weaker than they already are, then injections it is. I already take them anyway, so I might as well as 2 more in, that is if it is right now me. Of course there is all of the other pain stuff, joint stuff, and the list is endless to kind of go over... but if we can get at least the RA meds changed over to something else, and get me on those osteoporosis meds... plus I am sure he will have some answers on other things for me... I will be happy...

Then tomorrow, I go to the "foot" doctor... she is taking a look at my big toes, ankles etc... and we are going to see if I need "tarsus tunnel" surgery in my big toes... from the tests it appears that night help so we shall see... From there Friday, I go to have a CT scan on both hips... yes, that one will cost out of butt... they now charge a fortune even with insurance for the damned things... but since my hips seems to be so sore, and giving me hell even after the injections a couple of weeks ago, it could be they are causing lots of the issues I have with my lower back, legs and hips.

AND if things are not bad enough!!! I FOUND OUT MONDAY, that this TOP FRONT TOOTH, THAT GOT busted off half in two in the 4 wheeler accident when I was about 25, is now loose, and has enough decay, that it is no LONGER PATCHABLE!!! My dentist had to tell me I am going to be looking at a ROOT CANAL AND CROWN! I almost DIED, FAINTED, PASSED OUT, AND FREAKED, when I called for A PRICE FOR THOSE!!!!! How the HELL DOES ANYONE AFFORD A ROOT CANAL AND CROWN!!!?????? Lord have mercy, that is like buying a damned car!!! I do not know what I will do on that one... the "cheapest" I found was about $1,600.00 FOR BOTH! I called even "Monarch Dental" and hell they wanted something like well over $2,300.00 OR MORE FOR THE TWO OF THEM!!! Hell I thought they were supposed to be "discounted"... It is insanity... but I have NO PLACE to have a "partial plate" to Hook onto, due to my bad teeth that have just been pulled in back due to the Sjogren's... and I was told if I had them all pulled, the Sjogren's would also cause me grief with a plate... due to the dry mouth... so it is damned if I do, and damned if I don't... I am just baffled over that one...

Well, I shall just stop for now... lots of other stuff I could go into, but I want to get some other stuff done today, since I will be once again in and out the rest of the week with tests and doctors... damned I am over sick of it all... Hugs to all... thank you everyone for your compassion, kindness and friendship.... Hugs, Rhia

Monday, August 12, 2013

When a "good" situation goes HORRIBLY wrong - finishes up from FB posting....

It is from his personal doctor, who he has been seeing now for over 5 YEARS... maybe more... almost since we got to TX.. and we got here in 2005... well, basically, due to THEIR ISSUE, WITH NOT DOING A PROPER TYPE OF LAB WORK!, they arbitrarily decided to send him a KISS OFF LETTER... BASICALLY... in other words... because the "lab work" was DONE IMPROPERLY, rather than checking it out TO FIND OUT WHY IT WAS "NOT RIGHT"... THEY send him a letter, saying "I WON'T SEE YOU ANYMORE"... NOR PRESCRIBE YOUR MEDICATIONS YOU NEED! Now WHY in the HELL would ANY PHYSICIAN with ANY GOOD RELATIONSHIP with a LONG TERM VERY WELL KNOWN PATIENT, THAT has been there forever... and DOES TO THE LETTER whatever this doctor asks.... AND PAYS CASH.. he has NO INSURANCE... just decide NOT TO TALK TO YOU..Not to have you come into the office, JUST HAVE SOME CERTIFIED FORM LETTER SENT TO YOU ON A FRIDAY, so the OFFICE IS CLOSED... and ALLOW A PATIENT TO NOT ONLY BE TORE UP, DISMAYED, PUZZLED, AND ASKING WHAT THE HELL IS GOING ON???? It is BEYOND ME! It is INSANITY!! I do KNOW... THAT THERE IS SOMEONE IN THE OFFICE, THAT DOES NOT care for "us".... and I also know they can be in a position to CAUSE MAJOR ISSUES, due to the position that they play at that doctors office... and it would NOT surprise me IF THEY DID NOT HAVE SOMETHING TO DO WITH ALL OF THIS... Need less to say, IT HAS CAUSED Jim MORE GRIEF TO THE PLACE HE HAS ME HORRIBLY WORRIED... he is BEING ACCUSED TO SOMETHING THAT IS NOT ANYTHING BUT A HORRID LIE!!! AND A JOKE... but IT HAS BEEN TO THE PLACE OF BEING SO UPSET on TOP OF MY OWN ISSUES WITH HEALTH, that I fear I am going to have another HEART ATTACK!!! I am beyond with words upset over all of this... I FEAR EVEN POSTING THIS... because I KNOW THIS TOWN TOO WELL!!!!! (and we are talking about medications that Jim needs... blood pressure, cholesterol, (Anti-depressants, his stomach meds and the meds he takes for his lower back, that without he cannot work!) After all of the research I did online, I found out, that WE PAID FOR THE RIGHT TEST! and these results have been in now for 2 WEEKS... yet we just get this stupid letter this past FRIDAY! WHAT IS UP WITH THAT?????? We have copied documentation from several sources, he has written a long letter about this entire ordeal, attached with the "lab work" done wrong (and it even says it was NOT done as it should have been), and taken it to this office today)... Please continue to pray for us... this is just not good at all.... We KNOW what WE ARE DOING IS RIGHT... but a doctor can make or break you... if they want... or someone else in their office with the "right" or "wrong" power... can make your life a living hell....

Saturday, August 10, 2013

Grand Showing over the next couple of Nights! The Perseids Are Back!!!

The Perseid's are back! They are supposed to be spectacular, and peak on Sunday and Monday with 100 or more an hour! Thought I would share some information for those of you who are night owls and might enjoy the "show"....

http://www.nasa.gov/connect/chat/perseids_2013.html#.UgXc8FOUXgB Perseids Meteor Showers

http://earthsky.org/astronomy-essentials/earthskys-meteor-shower-guide

45 Tips for Life (saw this in FB and wanted to share)

I saw this in FB just a little while ago in one of my groups, and it just seemed to "fit" after the week from hell I, along with several have had... thought it might help you also get through a rough patch of the "stickers" of life... :)

45 Tips For Life

1. Life isn't fair, but it's still good.

2. When in doubt, just take the next small step.

3. Life is too short – enjoy it.

4. Your job won't take care of you when you are sick.
Your friends and family will.

5. Pay off your credit cards every month.

6. You don't have to win every argument.
Stay true to yourself.

7. Cry with someone.
It's more healing than crying alone.

8. It's OK to get angry with God. He can take it.

9. Save for retirement starting with your first paycheck.

10. When it comes to chocolate, resistance is futile.

11. Make peace with your past
so it won't screw up the present.

12. It's OK to let your children see you cry.

13. Don't compare your life to others.
You have no idea what their journey is all about.

14. If a relationship has to be a secret,
you shouldn't be in it.

15. Everything can change in the blink of an eye
But don't worry; God never blinks.

16.. Take a deep breath.
It calms the mind.

17. Get rid of anything that isn't useful.
Clutter weighs you down in many ways.

18. Whatever doesn't kill you really
does make you stronger.

19. It's never too late to be happy.
But it’s all up to you and no one else.

20. When it comes to going after what you love in life,
don't take no for an answer.

21. Burn the candles, use the nice sheets,
wear the fancy lingerie. Don't
save it for a special occasion.
Today is special.

Over prepare, then go with the flow.

23. Be eccentric now.
Don't wait for old age to wear purple.

24. The most important sex organ is the brain.

25. No one is in charge of your happiness but you.

26. Frame every so-called disaster with these words
'In five years, will this matter?'

27. Always choose life.

28. Forgive but don’t forget.

29. What other people think of you
is none of your business.

30. Time heals almost everything.
Give time time.

31. However good or bad a situation is,
it will change.

32. Don't take yourself so seriously.
No one else does.

33. Believe in miracles.

34. God loves you because of who God is,
not because of anything you did or didn't do.

35. Don't audit life.
Show up and make the most of it now.

36. Growing old beats the alternative --
dying young.

37. Your children get only one childhood.

38. All that truly matters in the end is that you loved.

39. Get outside every day.
Miracles are waiting everywhere.

40. If we all threw our problems in a pile

and saw everyone else's, we'd
grab ours back.

41. Envy is a waste of time.
Accept what you already have not what you need.

42. The best is yet to come...

43. No matter how you feel,
get up, dress up and show up.

44. Yield.

45. Life isn't tied with a bow,
but it's still a gift."

Friday, August 9, 2013

Dealing with the Realms of Brain Fog

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....

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.

"TIS THROUGH!!! I HAVE HAD ENOUGH and THEY WON FINALLY.... I am no longer willing or able to fight them!

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..