Want to Update everyone here.... things are not very well right now

I am going to just "post" a few of my Facebook posts so everyone will know WHY I have not said much here about the Arthritis Summit....

I will say it was AWESOME! I would go back again in a heart beat! it was one of the best experiences of my life. When I get some pictures out of the camera etc. I will definitely tell you more about all of it.


But, just about the time the Summit finished up, my family suffered HORRIBLE, almost NIGHTMARE NEWS!!! My husband Jim, has only a "Step-Mom" other than me in his family. He had not seen her in over 12 years and I had not met her even though we have been married almost 10 years. So, Jim is originally from Washington DC. This was a perfect time for him to meet me after the Summit on Wednesday, we could stay with his Mom, and get to visit with her. And he could show me the "rest" of DC!!! Well, she was coming to pick me up, His plane was not due in until after 5:00pm due to me thinking we may not get back from the House of Representatives until 5pm or so from the schedule. But, we were back by noon. So, she was going to pick up me, and take me to her home, and he was going to come into Falls Church via the Train or whatever... anyway he would be very close once he got his luggage & came to that station. Well, she misunderstood and went to the "other" Hilton in DC, thinking I was there, rather than at the Capitol Hilton. So, she was late. I was outside enjoying the sun, since the day before we were in sleet and HUGE snow flakes, and COLD all day long. The wind was still cold, but the sun kind of warmed it up a bit. Anyway, due to the buses, etc. my cell phone was ringing, but I could not hear or feel it. I happened to go back in and see if I had missed her somehow and then I saw my daughter had called like 7 times!!! I knew SOMETHING was very wrong....So, I find out that my husband Jim, while on his way in Dallas to the airport to come to DC, was in an extremely bad car accident. As best as we know at the moment, an 18 wheeler rear ended him, and then shoved him up under a car or truck in front of him. We also were told the car may have spun him into other traffic. Needless to say, he is in one heck of a mess. Just about every RIB on BOTH sides are broken. They did massive 8 LEVEL back surgery Thursday that took 7 hours... from C-7 DOWN to T-7.... He has a "shattered" shoulder, a broken leg, a tiny "tear" on the outside of his main Aorta, a mild concussion, and he cannot "feel" himself move his legs right now. They first stablized his spine, then are going onto work on other things. I have some updates on my Facebook page. and I will just put a link to it here... that way if you want to know changes, and how he is doing you can....

I am also in not great shape. I fell that early morning he had the accident and cut through my bottom lip, bruised the heck out of my chin, skinned up both artificial knees ... I am barely able to walk, I am SO SORE from all of it and my hips are just hurting so badly... I DO have a Rituxan infusion FINALLY  SCHEDULED for Wednesday... but I have an appointment with the dentist. I have cracked off several teeth due to this Sjogren's and I have one that really needs to be pulled... it is hurting badly... I also think I maybe coming down with bronchitis... so I may have to make a trip to the urgent care center today, so it does not mess me up worse with everything. I cannot help him, if I am sick... thus I have to try and get the care I need also.

Here is the "Facebook" URL:

https://www.facebook.com/ifaarhia 


I am updating that page above so everyone can know what is going on. I realized it is just easier to do all of it in one spot and that way everyone knows the same information.... I appreciate everything that so far you are all saying... and wishing for us... Please keep Jim and I, and my family, his Mom and so forth in your thoughts and prayers. This is a very BAD situation, and sounds like as I hope IF things ar as they say, someone, (not m husband) was very in the wrong... but as you will read, I cannot even get the police report for another about 7 days or so... see the page above for updates and as soon as I have things from the Arthritis Summit I will post them :):) What an incredible experience! I am definitely going through to become an Ambassador.. and all they did to help me get back to Texas after Jim was hurt so badly was just totally amazing... along with another gentleman that helped me so much. He got hold of the proper people, helped me get on the plane, and back to Dallas very quickly... I will never be able to thank Chris Nieto and Laura Keival (Arthritis Foundation)..... along with Serena, Kerri, Pam .... everyone was totally amazing!!!!!

Well, By Grace Go I

this shall be quick for now!!! By Grace go I!!! I have to be at the airport about 4:30 - 5am my place leave at 6:30am!!! And I am off to Washington DC to the Arthritis Foundation Summit!!! I am nervous, scared, terrified, joyous, have much pride, and all kinds of emotions right now are going through me. Even my puppies know something is up They are up this early and they never do that...

I will post the evening after I am through, I have no "smart" phone, mine is kind of dumb!


Take care and I will have LOTS to post soon!

Announcing the 4th Annual World AutoImmune Arthritis Day! Come Join Us!

JOIN THE GLOBAL VIRTUAL WAVE NOW

“World Autoimmune Arthritis Day is coming May 20th, pre-registration opens TODAY- Get excited and join the Global Virtual Wave by sharing this post!” 

To be part of the wave all you have to do is “share” this post.

World Autoimmune Arthritis Day
Theme: A Day in the Life of an Autoimmune Arthritis Patient

This Global Virtual Wave marks the official OPENING OF World Autoimmune Arthritis Day 2014 (WAAD14) Registration as we start the countdown to May 20th.

WAAD14 celebrates May 20th in EVERY time zone in the world, so the online Virtual Convention “opens” its’ virtual doors at 6am ET/USA on May 19th and runs for 47 continuous hours, closing on May 21st 5am ET/USA. You can visit dozens of virtual booths hosted by organizations around the world, tune in to live Chats by scientists, patient advocates and more, send supporters to the Day in the Life of an World Autoimmune Arthritis Day Patient feature booth, learn about all the latest research and download 1,000's of resources right to your home computer!!!

So let's start the wave and get pre-registered for the event. Those who pre-register get a complimentary WAAD14 limited edition bag (ships internationally). Pre-registration cost to attend is $5.00 USD and $7.00 USD after the event begins at 6am ET/USA May 19th. 100% of the proceeds are used to put on the event.

Learn more about WAAD14:
http://www.worldautoimmunearthritisday.org/Home_Page.html

Register: https://engage.vevent.com/rt/ifaa~waad14

World Autoimmune Arthritis Day!!!

World Autoimmune Arthritis Day Are YOU ready for World Autoimmune Arthritis Day 2014? WE ARE!Tomorrow we will launch a GLOBAL VIRTUAL WAVE to kick off the official registration, so make sure to join us and dozens of other organizations as we ignite the world in excitement about the countdown to May 20th!But first, the "Best of the Best" 2014 Nominations are OPEN! Please use this link to nominate the Best Bloggers, Support Groups, and Rheumatologists around the world. All nominees will be posted as resources for WAAD14.To learn more about WAAD14 and to nominate someone, visit:  http://www.worldautoimmunearthritisday.org/Nominate__BEST_of_2014.html

More on RA- Critical News when it comes to how it Systemically Effects the Body...

There are several great links, article and information that is critical to know about  RA and how it can Systemically Effect the Body. Many people think of "Rheumatoid Arthritis" as "arthritis", which is TOTALLY WRONG!  "RA:(Rheumatoid Arthritis) can effect just about every part of the body... starting at the joints sometimes. Yet, it can cause horrible fatigue, heart problems, liver and kidney problems, problems with the brain, with they eyes, with the ears... and so much more. That is why you see so many of us trying to "get the word out" and spread the news these are serious illnesses that when you delve into them, you find they can be "deadly". Lupus, which is another Autoimmune Arthritis,  can even be worse, damaging skin, bones, the heart, liver, the lungs, causing severe fatigue, brain fog, and leading to heart problems and stroke problems. Women and/or men with RA have a 50 percent chance HIGHER in have a heart attack or stroke.

When I saw these a moment ago, I wanted to post them. They go along with the WAAD14 and all of the information, research, and activist roles we are in with the IFAA, the Arthritis Foundation, WEGO  and many others out there trying to get better research that would lead to a earlier diagnosis, earlier treatment, less sign effects & catch these illness BEFORE they do GARVE Damage as they have on many of us.                          


http://www.medpagetoday.com/resource-center/rheumatoid-arthritis/expert-interview/a/44104


http://www.medpagetoday.com/resource-center/rheumatoid-arthritis/early-diagnosis/a/44107



http://www.medpagetoday.com/resource-center/rheumatoid-arthritis/



http://www.medpagetoday.com/resource-center/rheumatoid-arthritis/Infographic/i/38228?xid=nl_mpt_DHE_2014-03-17&utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&eun=g773630d0r&userid=773630&email=rhia@ravishingrhia.com&mu_id=5952786

An Autoimmune Arthritic Systemic Life: More on the Continuing Saga of "Rhia's Law" If it ...

An Autoimmune Arthritic Systemic Life: More on the Continuing Saga of "Rhia's Law" If it Will Happen Then It Will Be Rhia...Honestly, when I go back and read some of the things that I've been through, put up with, did do, did not do... and all of the "happen to me... it seems impossible that ONE person could have gone through so much in just 8 years! Of course there were other things well before all of the autoimmune illnesses began, and I thought those were horrible. I had moved several times. From Lancaster CA (Whish I loved and still do), back to TX to have a knee surgery, then from Ennis to Austin TX, where I rehabbed the knee an was ready to take a job, then something happened and I came back to Ft. Worth TX. Well that is when 9/11 happened. So, I quickly got back to Ennis (as quickly as I could at that time), and within 6 weeks was headed for Seattle WA. That is where my entire life changed "for the good". I got somewhat "healthy" ... I had a job a loved!!! .. I was making decent money... had a "man" in my life that I was not really sure of, but I did make good friends with his family, and other people around so by the time he pulled a stunt, went to Florida to see another "friend" who turned out to be a woman he had bought a cell phone to talk to every night. He Thought I did NOT know, but I found all of the bag, box and everything in the trunk of the car when I went o get groceries ... PLUS I KNEW E woULD NECER go through the halls for hours normally each night. He done a quick run through usually that took about 25 minutes and he was back. When it started to be an hour, more than an hour, 2 hours, 3 hours and I confronted him with cell phone box and bag in hand... he admitted he was "planning" to go to FL to "see" his friend... Well hell I am NOT stupid! So, he went all right... but I TOOK MY MONEY out of the acct... and left him ONLY WHAT WAS HIS... (He had already taken some out so he was screwed when he got there, and she really was WEIRD. and kind of not interested in him.... anyway... I thought after having to be "on the run" from a "husband" at that time I was trying to "divorce". The ONLY way I could keep him from abusing me physically, mentally and emotionally, was to GET out of TX! He still FOUND ME twice or three times! Each time I thought I was "safe", someone would tell him, and the next thing I know he is around "haunting" me again. Even after I had been in Seattle for over 4 years, divorced him, he got hold of my phone number and began calling and threatening myself and my "finance" then, Jim. Even when we came back to Texas for my daughters' wedding (his daughter) he had told everyone he would "take care" of both of us while we were there. Finally, some of my daughter's new husbands' "buddies" removed him from the premises and told him to stay the hell away. He had almost killed me several times in the past. I put up and "hid" the abuse for many years. I was scared he would hurt me worse, or the kids, or do something terrible. So, I kept my mouth shut to everyone. No body, but my kids knew it, and I would not allow them to tell anyone. I kept them away at the worst times with their friends. Little did I know he was not only "addicted" to Meth.... I knew he was an alcoholic.... but he had "meth" hidden under our shed in my back yard... lots of it there at the last I was told... I did not find out about the drug abuse until just a few months before I moved back to TX, in 2005! Dad had passed away, and even though I never wanted to leave Seattle I had to come back to help my Mom. By this time the "ex", had not only been "caught" and arrested, but was in jail for a LONG time! So, when we first got here, there was about a year or more we never had to be concerned about him. But, I STILL to this DAY have "night terrors" that I wake up screaming, scared to death he is hurting me and JIM, or hurting me somewhere in town.... I carry mace with me everywhere I go. And I still find myself looking over my shoulders, for him even though I have been away from him since 2001, he still "haunts me"....

But, ALL of that, as HORRIBLE and as bad as it was.... and it was bad... still does NOT compare with what these immune illnesses have done to me.... they have also turned my life inside out, they have caused me to be unable to do SO MANY things, I've so wanted to do... EVEN just EVERYDAY. ordinary things... I am always either dealing with a flare, or a surgery, or getting over an infection, or my mouth full of ulcers and knots, or my throat so sore I cannot stand to drink anything. We make plans and I get ill so we have to cancel them. I am supposed to be taking care of my Mom. And I feel as If sometimes "She" is having to "take care" of me!!! NOW these teeth.... and my vision again being so bad!!! Yet, if I go to the physicians most of them are no further along, so their answers are it is the Lupus, RA, Sjogren's, Raynaud's the medications, like the prednisone, which my own PCP calls it a "necessary evil"... if I have a flare, it is the only thing to help get it kind of under control... THEN when my Rheumatologist FINALLY gets hold of the ONE medication a biologic, that finally "HELPS' with the morning stiffness, the pain in my legs and feet, the stiff and swollen fingers and thumbs, my wrists swollen and joints, the INSURANCE gives me A MAJOR SCREW UP, SO I GO 7 WEEKS WITHOUT MY MEDICATION! Which sent me into 2 MAJOR flares! Along with something that was a bacterial lung infection, which I though I was over, the flares came on, they gave me more antibiotics that caused me to have certain type of "colitis" caused by certain antibiotics, thus it was a nightmare because then my husband gets ill, and it seems we may have also contracted a stomach virus, but we could not find out because it took them A WEEK to get back lab work, rather than go ahead and treat me. Well, they finally "looked" at my lab work and said "nothing was wrong". THIS WAS ON A FRIDAY WHEN I CALLED THEM myself. So, the "FOLLOWING" TUESDAY I get a Call from the same doctors office, and the nurse says " the PA looked at your labs and you DO have a "BACTERIAL YEAST INFECTION IN YOUR COLON" AND they have "called in" medication for it!!!! There is MORE to the story about them, but you can be assured that I am Looking for another PCP!!!

Then of course is the entire matter of my teeth...

All of this is EFFECTING MY invitation to go to Washington DC for the Arthritis Foundation after I was invited to go. Now as I get ready, I am ill again, so I am not sure I will get to go Monday Morning!!!! I am totally devastated over the entire thing... and these are just "pieces" of what is happening... the "book" if I ever get to where I can write it will Tell ALL OF IT for sure!

Thank Goodness I have people praying for me all over the world! Wishing me positive thoughts That I will be "well enough" to go!!!!

What can I Say.. but I am so appreciative of those that are standing beside me holding my hand!!!!


Rhia

Asking for YOUR Thoughts and Prayers for This is SUCH A Critical Week-May I be Well Enough to be in DC to tell my Senators and Representative my Story

This is not just for myself, but it is for ALL OF US WITH THESE AUTOIMMUNE ARTHRITIC ILLNESSES AND OTHER CHRONIC AUTOIMMUNE ILLNESSES AND CHRONIC PAIN, FM, AND SO MY MORE... SO PLEASE KEEP ME AND LIFT ME UP IF YOU WILL!

Well Folks this is my LAST WEEK to be PREPARED to go to Washington DC NEXT MONDAY!!! Please keep me in your thoughts and prayers this week. In one week, I am supposed to be boarding a plane to fly to Washington DC to be in front of my Senators and Representative and tell them "my story" about my illnesses and how they have dramatically effected my life.... I have been so ill, it has been touch and go for me, we don't know if I will be well enough to go, and a few "kinks" worked out of being gone so long (my husband is supposed to fly in on Wed. when I am through and we are supposed to go see his Step-Mom that he had not seen in over 11 years and I have never met her)... so this week is my last week for everything to "fall" into place, and for me to be able to get on that plane... and be well enough, and everything 'worked" out so I can go... this is a critical point for ALL of us! This is sponsored by the Arthritis Foundation! So all I get to say and do effects ALL of us... with chronic illnesses... please say prayers that as I said I am well enough all here at home is worked out where I can get on that plane next Monday morningI appreciate all of the kindness, prayers, love and support I have received from all of you, and everyone in the other groups, that have been there to pray for me about my health, and all that life has sometimes pitched at me! You are all there to CHEER me on, when things go well, and there to support me when things are on the rocky cliffs of all of these autoimmune illnesses and the way that they have "altered" my life in so many ways, keeping me from being and doing all the things I want to do in life... I know this is one bunch of incredible people that are here for me!!!! Again this is SO CRITICAL and a dream of mine to be able to tell those on Capitol Hill how not just myself but ALL of us suffering from the pain, the horrible things we go through, how our quality of life is non-existent, thus me being there is like me standing i front of the White house for ALL of US!!! Please say an extra prayer this week, for I so need all of the extra support I can get.... Hugs to all.. Rhia 

This will help you understand why this is so important, please take a moment to go to this link and see what I will be doing there in D.C. at this time next week!

The Arthritis Foundation Advocacy Summit of 2014

More on the Continuing Saga of "Rhia's Law" If it is going to Happen, It Shall Happen to Rhia!!!

Honestly, when I go back and read some of the things that I've been through, put up with, did do, did not do... and all of the "happenings in my life"; it is almost impossible to believe myself Yet, I am the one who is and who is going to go through them.

Just one, is insanity! When you decide to "string" them all together, it almost feels like I am writing some fiction novel. Some of the things that have happened, it just seems impossible that any one human could withstand the pressure, stress, and the trauma I've endured. What I am about to include below is just a week or so worth of "happening. Honestly due to the "brain fog" I am just in a place that I can't even type. I find myself misspelling everything, or it is like I can never have my fingers on the right keys. Now this morning, I've lost my "coupons". Yesterday, I went grocery shopping and I had them with me. I remember having them and in fact I thought I had laid them down in one of my reusable bags. I was going to look through them this morning and they are just gone! Alone with the "sales papers" from WalGreens and and CVS, etc! I swear I had left one in the basket and someone really snapped those up. Those coupons, if you really think about it are almost like "money". when you are saving 50 cents, a dollar, 2 or 3 dollars, 25 cent 5, 4, 6 of them. Believe me I've walked out and save 40% on grocery bills. And at WalGreens and CVS, there are times I actual "save" over 50%! I have came in and the total I saved is more than I spent! Anyway, of course, there but it is true and a great tip. With all of our market products going UP, UP, UP and no DOWN in sight, every dime is going to help in one way or the other saved.

Before I copy and paste my latest rant on my own life's mysteries... I have a question for you...
WHY when you go into a DOCTOR'S OFFICE do they ALWAYS ASK YOU, "How are you feeling or doing today? NOW if I were doing "okay" I would probably NOT standing in this office!!!

I know there are times we go in for a "wellness" check, etc.. so we might not be extremely ill. Yet, when they look down on the computer or think back that you have called in that day for a "sick visit" then asking how you are is just is about stupid, as spitting out of the back of a truck going 30 miles an hour down the road!

I've come to have this statement "embedded" in my mind! And it stands so True for Me!

"It's Damned if I DO!!!! "And it 's DAMNED if I don't"

"And Now for the rest of the mess"

I wanted to let all of you know I've received THREE letters back from Senator Cornyn on 3 emails I'e sent him. He has definitely read what I wrote or someone in his "team" answered them, and just make it appear as if the Senator is "listening". He has sent emails in regard to "health care", "the payment doctors are "not getting paid" in regard to especially Medicare issues, and also is addressing more money going for research  & the allocation of funds to  National Institutes of Health and the Centers for Disease Control and Prevention, to try and help with all illnesses especially those of the chronic nature such as Lupus, RA, Diabetes and so forth. I was a bit hesitant to be "thrilled" because he is usually not one of the Senators that I really agree with. But pieces of what he said in each email gave me a bit of hope that there possibly maybe changes of a good nature coming along the pipeline. I think the government in general is seeing that they HAVE to step UP to the plate, pay our "good physicians" properly, and give them incentives to continue to keep their practices open. Without any type of government aid of any kind, whether it be a larger pay from Medicare and Medicare Advantage Plans, or incentives due to being "doctors that are superior" in helping their patients, while paying staff properly, keeping the good nurses on, and yet keeping costs down as much as they can without "harming" patients or those who work for them and need a decent salary, we are doomed! We already have a drastic shortage of MD's, when it comes to Family Doctors, and those who are regular MD's, who are not in the "specialized" business. Without our PCP, (Primary Care Physicians) we would certainly be in huge trouble. And without incentives for those types of physicians to be able to know when they graduate, they can pay off all of their student loans in a reasonable amount of time, be able to pay a staff and have a decent practice without feeling like they must take an over abundance of patients just to survive paying loans off, paying for their practice, a family, the insurance that is so high that goes along with being a physician, and also be able to take people's insurance, including Medicare, Medicare Advantage Plans, and Medicaid... then Doctors will NOT go into a General Practice. Our doctors are "specializing" us right out of the good old days when our physicians did it all. They saw you for a cold and the flu, they delivered babies, they took out gall bladders, they saw you in the ER in the middle of a weekend to sew you up, or to see you in the middle of the night when you were ill.  Those days of doctors are gone. Well, not entirely. Now we are seeing these new types of practices where you "pay" a certain fee a year and you get those types of services. But, usually it is a fee you pay up front each year, and you do not file insurance and so forth. They are more known as a "concierge" type of physician.  Yet, these types of physicians and their type of care does not come "cheap". Those annual fees are extremely expensive, and usually only the more "lucrative type of patient" can afford that type of coverage. So, that still leaves us without our "old fashioned" family physician. It is a huge and looming situation that those of us that are in a "chronic illness" type of situation see the "downfall" of the medical world around us. We cannot get the care we need, We cannot get the proper diagnosis, the medications, the labs and tests, or the proper care of any type, due to the high cost of it all. And even those of us with insurance, Medicare, a Medicare Advantage Plan, Medicaid and so forth are "losing the battle" also, because again doctors are not getting paid by these entities without a fight! Thus, they cannot keep their doors open to their practice without getting paid by those companies. Then they drop the companies and who can afford to pay out of pocket cash for treatments and medications? Have you looked lately at one of your print outs from your prescriptions when you pick it up from your pharmacy's? Like Wal-Greens, WM, CVS and so forth. I look at what mine say as far as what I "paid" versus what it would have cost me without my "insurance" paying. Medications that are even generic with costs of  $500.00. $750.00, $2,500.00 for a MONTH'S supply!  There is absolutely NO WAY those of us chronically ill or just ill for a flu and so forth can afford to pay those kinds of charges out of pocket for medications! It is insanity to think we can. Even "richer" folks would go broke paying $3,500.00 a month for a medication. But, my Aunt's cancer medication is like that. In the first place it is difficult to get, and in the 2nd place it is something like $4,000.00 a month, for 30 pills! Why they at one time were what I would call "well off"... and even at that, there is no way that they could afford those kinds of costs on medications! They have found help that does pay for the medications, but not all are the fortunate, So, WE, and I mean ALL of us, are going to have to do OUR PART, and let our thoughts be known. We have got to stand up as a nation together, solidified, and let the insurance companies, the government, the pharmacies, doctors, and pharmaceutical companies know WE are NOT going to take this "mess" as an answer anymore. It is time to find a solution, to be finding treatments, finding answers and diagnosis more quickly, getting doctors trained and better equipped to find out what is wrong, and get us properly treated in the nick of time, not after it is too late. Like myself... due to the Sjogren's, which honestly, up until the last year when all of my teeth are literally rotting and falling out of my mouth in pieces has any doctor been concerned over the Sjogren's. If I do not mention it, they never say a word. I am the one that had to research it and ask to try the 2 medications for it. Which neither are very good, but I am on one of them. Now, I face Lord knows what, There is so "good" solution honestly. I just had another tooth pulled Monday, and I am sure I face at least 6 more, maybe even more than that that must be pulled. There is no hope for them. Then the few I have that are "patched" just to keep them there, are possibly not long for falling to pieces also. Because none of this was addressed 7, 10, 12 years ago, before the decay set in, now it is TOO LATE. And come to find out (first of all I NEVER wanted dentures and the thought of not having my own teeth still just almost makes me sick to my stomach) even those... even the latest, "implants" are really NOT a GOOD SOLUTION for anyone with Sjögren's!!! Due to the Lack of saliva, those are difficult to deal with in the mouth. I still must find ways to keep my mouth moist constantly, by chewing certain sugar free gums with Xyitol in them, or sipping certain things like green tea, water, things without sugar and without acid in them. But even at that, still it is difficult to do. Plus the entire thing with the dental implants, is not done "over night". It can take up to a YEAR to completely finish the process. Which usually involves 2 surgeries, to get the implants in place, maybe more if your bone is not stable in the jaw, thus bone implant must be done first, then the implants put in, then the special dentures that "snap" down on those implants made to fit properly. So, it is a huge ordeal, and expensive one and one that takes time to do and to heal. It is insanity!    this is just one piece of the puzzle, and this puzzle is more than 1,000 pieces. It is more like 10,000 pieces and growing each day. The ONLY end we will ever see in sight is to stand up and tell them (our Senators, Our Representatives, Our Government ... all of them) we want better, and we want all of this insanity stopped! We deserve proper health care, at a proper price... and our health care workers deserve a proper salary, with decent working times and decent working conditions... it is a vicious cycle and it will NOT end unless we stand UP and MAKE IT! ONE VOICE can move mountains... think what 100,000, or a MILLION voices can do!                                                        

The Arthritis Foundation's National Advocacy Summit Only Days Away!!!

Please everyone PRAY that I am well enough and everything works out here so I can go stand and give my story to Congress! I will be speaking for ALL of us!

This is one of the dreams I have Had all my Life... to "Stand" upon the "steps" of the White House and have ALL of them listening to ALL WE go through in a matter of a day, a week, a month, a year..

 how our quality of life is non-existent...  If I can JUST SHOW them the scars of what RA, Lupus and now Sjögrens' has done to my teeth.... in less than a year neatly ALL of my teeth have either completely rotted and had to be pulled... or "patched" so I can keep it a while longer, now others have like at least 6 holes in them... and it just goes and goes... it is insanity!!!!

So REMEMBER ALL of the VOICES on MARCH 24th through the 26TH that are speaking for YOU, for I and for ALL of us!!!


You can help and give your voices with the Arthritis Foundation at this URL:

http://www.arthritis.org/

(Part 3) My "intuition" was right... it just never ends... I feel as if all my life will be one big ball of a foggy brained, Autoimmune RA/Lupus/Sjögren's and who knows what else of a disaster...

Part3 - How many Opinions does it take from who many "Physicians" before you feel at ease? Peering into the Looking Glass of Autoimmune Illnesses, and deciding where to begin.... and where to END? 

Can you put your "health" in the hands of those that are supposed to be "educated", who have been through testing, who have taken a "vow" to  - "Do No Harm?" - and these days what does that small sentence truly mean.... "Do NO Harm"?

Trust... Trust who? Well from what I've experienced over the past 3 to 4 weeks, I am not sure who is the real insane person around? The doctors, the insurance company, me... or whom... but I do know NOTHING is getting better at all.

I called my pain physician's office yesterday. The pain that has decided to plague my body for a 3rd time in about 18 months has reared its ugly head again. I tried to tell him last week, when my medication for the pain pump to be refilled was NOT THERE! It was sitting in some office in Phoenix AZ! So, I go without my "extra boluses" so I do NOT run out over the weekend and the pump start "beeping"... and run out before Monday. I had already been "hurting" worse for days before that. Given the fact that I was NOT given my biologic when it should have been given, then surgery, then not being able to do anything for 6 weeks because of the surgery, then I got sick and was ill for weeks, turned around and low and behold the beginnings of not just ONE flare but TWO! RA and Lupus! Then another 14 days to try to get SOME KIND of BIOLOGIC the insurance WOULD pay for, and then waited for the prior authorization that went to the wrong pharmacy. So, that all had to be redone and sent to the proper place. All the while I knew my body was in the stages of rebelling. I felt it each day getting worse. Worse to the place, that once again I could sit in this floor, scream, cry, and beg... but that would not do a thing, but cause me to hurt worse.

So, after NO call back from my pain doctors office yesterday, I knew something was "wrong"... where his head is, and why after going through ALL he has watched me go through. Knowing my extreme health issues, or supposed to be knowing them, I get a call from his "nurse" who is a jackass anyway. I already had issues with her a couple of months ago over NOT getting my medication called in, before I ran out. Well, today was the day for me to call it in. When she called, I knew something was up. She goes on to tell me, that my doctor is calling me in some.... and he thought it would help with the "inflammation"... Well red flags went up everywhere... so out of my mouth came is it an NSAID? She paused, said wait a moment, and of course came back to say yes, Well, right back at you NO! Now this doctor has been seeing me since 2008, knowing ALL of my issues, and he knows I've had not just ONE heart attack but TWO! That is NOT including the GERD and all of my stomach issues. So, why the hell he became so "weird" about all of a sudden NOT upping my pain meds for a month is beyond my capacity to understand at this moment. After ALL he has watched me go through, and also portions of this beyond my control, their own crap with my medication not being there, thus I had to cut my meds "way back" for like 5 days... I already was in severe pain due to the entire biologic stuff... and now all of a sudden, for no reason, he decided to try to give me an NSAID? Hell, I would BE ON THEM, IF I could! I just looked at the phone as she said, well, I will call your other meds in Monday? What the hell? I am supposed to run out Monday, and they MAIL THEM FROM DALLAS! She knows that she cannot wait until the last moment to do that. OMG, I was ready to explode! Conveniently, he is out of the office "today". mmmmmm, he always is when you "need" something. I am still just blown away by his attitude, and I had even picked up on it, when I was at the office both times. Something at his office seems "off" now too.

What the hell is up with doctors all of a sudden? I've never seen so many weird changes of attitude, of how they treat their long term patients,  and the plethora of "lack of caring"... that I've witnessed in just three weeks.

Honestly, I trust my OWN judgement at this moment. more than I do several of my own physicians. I get the impression that their "realms" of health care have just about flown out the window when it comes to any patients who are on Medicare, Medicaid or a Medicare Advantage Plan. I've said it once, twice, and three times, plus... the government has their fingers so tied into all of it, that doctors cannot possibly do their jobs taking care of patients, all the while either the DEA, FDA, Medical Board, Medicare, Medicaid, other insurance companies, the government as a whole as ALL breathing down their necks.

I believe at last count, I've seen and heard at least 5 or 6 articles about "bad pain medication" in just the past week. Everyday over the course of this week there is yet another "gripe", whine and bitch about "pain medications" and addictions. Let me tell you right now, unless you have walked for ONE DAY, hell ONE HOUR in the severe amount of ever growing pain that myself along with so many of us deal with, you cannot imagine what that feels like, You cannot imagine in any way shape or form, how your entire body feels like it is a hot burning coal of fire.... from the tip top of your head, all the way down into the bottoms of your feet.

Then let's see. You have a job, you need to go to work. You need to take care of your home, your kids, your LIFE! HOW can anyone stand up and "deny" something for someone that they know will IMPROVE their quality of life?

The saddest thing about all of this.... it is just getting worse day by day... you have no where to turn anymore... family gives up, spouses leave, you are in nothing but a place of despair. Where do you go, which direction will lead you to an answer?

NO ONE, and I mean NO ONE should have to SUFFER THIS TYPE OF PAIN! Not one soul, should have to endure the kind of brain rattling, aching, like someone took a baseball bat and beat you from your toes to your head type of pain.

Our bodies are marvelous machines... when they are well oiled, taken care of , don't get knocked out of alignment, they can do some magnificent things. Yet, you allow your body to  get run down, draw upon some strange illness, whether it be a bacteria, a virus, some kind of chain reaction in our nervous systems, or just decides it is just going to run on 4 cylinders instead of 6 or 8, you are in one screwed up mess.

Just as I took a break for a few minutes, I saw an email come in from MedPage. I had been taking their newsletters for a long time, then stopped for awhile. About 2 months ago, as the latest and greatest news kept breaking about this, that and the other, when it comes to the health care industry (should say profession)... industry... yes, just another "brickness" in the wall I fear...

I come across this article. Much of it sums up exactly what I have been trying to portrait through my own words in these (parts... up to 3 now) posts about all of the crap that flies around throughout the entire medical world.

I will post the URL in this when I get my own "fogged" wisdom out of a brain that feels as if it has been drug through the mud... and not much med for sure... Why is it that Medicare in itself had doctors spend BILLIONS of dollars on "electronic systems" that now cause MORE red tape, MORE work, MORE PAPER, more time... and MORE Of everything BUT the ONE thing doctors are to do. spend TIME with their PATIENTS! In the "age of technology", when "phone" messages fly through the air, and not over a wire... when you can connect your computer to the internet and never plug in a wire, does it NOW take more papers than ever to see a doctor? I've been seeing my same pain specialist now for at least 6 years, for all of the exact things... yet I had to "fill out" an entire new set of paperwork that was about 10 pages of crap, they already knew and had on me. It was a waste of time, money, and they probably never looked at it what so ever. I would be willing to bet it went right into the recycle bin. Now my husband is a first time patient, and he sees the doctor for the first time, I can see "filling out" forms. But, my gosh, about 10 pages of that was just "stuff" to either initial or sign. And it is just exactly what the article I read talks about. MORE of a doctors and the professionals time spent screwing around SIGNING CRAP that means nothing to a patients level of care! When your physician has to spend more time looking down at a "whatever kind of lap tablet" that thing is they carry around now typing on, rather than examining you the patient, listening to you the patient, checking your heart, lungs, looking over your skin, everything else on you.... but honestly, I have watched my doctors lately squirm when they see me coming with my yellow or hot pink piece of paper they know is "my list", I can see them wanting to jump out of the window and run. Mine know I am GOING to have questions that I fully intend on getting answered before they leave that room. No more of going "unprepared". When I am off to the doctor, especially for a follow up that I've had the appointment for now for months, or I am seeing a new specialist for new symptoms, I will have them in that office until I feel I am satisfied with the answers. Yet, I've watched my own PCP one time set there and talk for an hour with me, then the next he stands with his hand on the door knob just waiting to catch a moment, that he can quickly escape. I realize he has other patients. I also know he does, thus I will not "over step" my grounds. But, I feel I deserve my "allotted" time. What they do though, is "allot" that same amount of time to about 6 patients, then that is there fault. If they overbook, just like the airlines do, then someone is going to have to either wait, or be hurried through. Normally, I find I am either the one being hurried through, OR I am the very LAST one called in for that "time slot" for sure. And what about this new thing of bringing you back to spend another 2 hours in that damned ice box cold exam room, when you could be sitting at least out in waiting area, catching everyone's germs as they come in! Nothing burns me up than for me to walk in, and 3 or 4 people come in behind me, all stating their appointments are scheduled the same time as mine! Hell, mine can't even see me and make a decent diagnosis and treatment plan alone with just me, much less 4 or 5 other "sick" people in the mix. Then of course here comes the nurse, asks all the questions, half way gets down what you say, takes your vitals, and says "okay" I will get all of this logged in and he/she will be in within a bit.... yeah right.... a bit my butt... more like 2 plus hours later, you have worn the seat completely out of your pants,  you have stretched, walked, watched the same pictures of their kids go by in a digital frame that have been there for years, looked out the window, listened to their elevator music/radio and all of the whispering, crying, hollering, and just about the time you are ready to explode, here they are "cordially" explaining about the emergency, and being "sorry" for being late... yeah right where the hell is my $25.00 you would charge me for being late? Some how that shoe never quite fits over on your foot, but it certainly does theirs.

I am so totally, utterly, completely, within, without, absolutely SICK AND TIRED... OF THE ENTIRE MEDICAL SCENE, that I could literally jump off this house, land on my two damned hurting legs... and I probably would feel better than I do right now!
What makes this even worse for me, is that this time the "brain fog", is more like a brain super mud... no transparency, no light, no even haze, just a thick mass of, I am not sure what I am saying or meaning from one moment to the next. I am catching myself repeating things in my postings, emails, even to what I say to Jim and Mom. Honestly, I cannot remember that I did just "write that" in the last post. Or that I told Mom that on the phone yesterday. I can't remember I saw this movie a month ago, or there would be no way for me to ever get home without a list. Whether I need 5 things or 50, nothing seems to "stick". All just seems to be sucked in a black, muddy sludge... along with all of the intense physical pain that surrounds me, and engulfs me.

I know people must be just thinking "oh, she is just having a bad few days", I am not one to "repeat" myself or forget what I just said. I do at times, but this is so much different...

continuing now on Sunday the 9th of March

I've tried to decide exactly how I want to handle the several glaring issues staring me down this next couple of weeks. I've  thought about everything from getting my teeth fixed, and how the heck I was going to get into that specialist in Dallas BEFORE they all fall completely out! This is NO LIE! I put the coffee on at 2:00 am this morning... yes the clocks rolled back and rather sleep you would think, but nope not me, I am wide awake. I happen to hear some of the neighbors coming home, opening car doors and slamming them, and their music just a blaring... yet my household, other than myself knew nothing. Jim has been "ill" again with flu like symptoms, so I decided or we decided I did not need to be exposed anymore than I had to. So I've been disinfecting everything. So, I went to take yet another BC powder, and I always have to have a small bite of something after I take one. they are quite unpleasant especially if any of it does not go down with the first drink. So, I grabbed a tiny piece of dark chocolate that was sitting there in the fridge. Now of course it is cold so it is a bit harder than not being out for awhile. But, just as I put it in my mouth and began to chew down on it, I felt something hard in my mouth. Well, it was not that bite of chocolate, because nothing was in it. So, I go "digging" around and find an entire back piece of one of my top back jaw teeth out. About the time the coffee is ready, I pour a cup and still something felt "odd" about that time I feel another piece of something hard, like a little sliver of some kind. Yes, sir it was another piece of tooth, BUT it came from a different tooth on the other  side of my mouth. Then I got to my computer, went to take one of my medications, and again I feel something "hard" in my mouth (not the pill) ... and again for a 3rd time off of another tooth, a chunk fell out! 
So, here I am at 2:30 am standing in my kitchen, literally watching my teeth fall apart. That was NOT the way I intended on spending my Early Sunday Morning. In fact, I had the intention last evening of possibly going to a new church this morning, depending on how I felt. This severe pain in my legs has just about sent me to the nut house, honestly. My head is not on straight, the brain fog is just beyond belief, and I am so utterly disappointed with the entire world right now, I am not sure where to even begin, 
My story sounds like child's play compared to some I realize. But, I tell you when you have been through what I've dealt with in the past 8 weeks or so, and don't forget it is just now a bit over 6 weeks since I had double hernia surgery. In fact this is really the 1st weekend I've been able to feel like I can do some things I had not been able to yet. I did vacuum the house, and I've done some bending over and picking things up out of the yard, trimming back some of my bushes that will hopefully come out soon... I still have not been on the exercise bike yet but that is due to the leg pain. I fear that my legs may hurt worse. With the entire situation with my pain doctor and his witch of a nurse, I assuredly do not want to get to hurting any worse if I can help it. 
I have SO MUCH I NEED  & MUST get done, or I won't be able to make the trip to DC. That will just break my heart. I've even thought about shortening the trip for myself, and coming home Friday. then let Jim stay until Sunday. That way the dogs only have to be watched after on Thursday and Friday until I get home whenever, and then Jim would fly in on Sunday and I'd have to go and pick him up. I am just not sure I can go yet at all, not in the shape I am in at this moment. But, it could be I would be able to at least make the Fly In... get to meet his Mom, and then they could have a really good visit, and catch up. It's been over 10 years since they have seen each other in person. So, it is totally important for him to try and go. Of course he also has so many issues with health, mainly severe arm, neck and back pain, I am not sure he will go and can withstand the trip either. 
His idea is "well I hurt if I am at home or in DC... well that is true but when you are at home... you can have your own "nervous breakdowns" without someone else knowing it. 

There is a great deal more I want to say here; so this post may have a 4th portion to it. 

I am not sure if I will do it that way, or just call this one "finished".... and begin anew ... probably begin new. Due to "perspectives" I realize that not everyone will "agree" or "disagree" with me on some things I've said, and believe.... 

But, I do believe that "WE" all of us .... talking now about the Chronically Ill Patients,  with illnesses that take away all that is good in our lives, and turn us inside out and upside down... Autoimmune Arthritis... and all of the other Autoimmune Illnesses... along with Chronic Pain, people suffering from FM (which I still believe is an autoimmune illness)... Chronic Fatigue Syndrome... and the other things like my friend just discovered... she has "Chiari"... where a portion of her brain stem is literally gone down into her spinal canal and is being "crushed"! It has taken all of her life of fussing, crying begging, screaming, tests after tests, and in a "test" for something else, they "found" this syndrome she was born with. 
due to the nature of this malformation... and the unbelievable story that it has taken over (I think she is about 50 years old, but she looks like she is 35) :):) for them to find this... she also has Lupus...  of which she is being treated for... Here is a link that explains this malformation... she does not know yet if she faces surgery or what... but by gosh anyone would be totally freaked out if they got this diagnosis after all these years.

http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm

Please comment.... I want to hear from YOU!!!!