Changing of The "Plans"... asking for positive thoughts....

Please keep "positive" thoughts my way as I try to delve into my 3rd book. I've been working on it off and on for a long while, and really began to watch it somewhat take "shape" after the first of 2015. But, I was also trying to juggle writing it, all of the errands, bills, groceries, shopping, house cleaning, cooking... and of course that list goes on and on... along with all of my activist, advocacy, Ambassador, and volunteer work. Now, I have tried to come up with more ways to make some of the daily "drum" of life, play a different tune for me. I've re-organized (or I trying to) how I deal with the daily things that all of us must do, and also be loyal to my own blog and book... PLUS remain a huge VOICE as  I feel I must in the realms of my advocacy, activism, volunteer, and ambassador work as well. I never want to "negate" how critical I feel it is to give true "voice" to those out there with these often daily, chronic illnesses, pain, and make sure I am doing my part to help in that also. So, as I try to "coordinate" more, "combine tasks more"... and give myself plenty of "quality time" to write. I can't write 10 sentences, then have to get up, leave, run errands, go to the market, do laundry, and 4 hours come back and pick up where I left off... my mind just does not work that way anymore... with all of the brain fog, as well as stress, and the "business" of life, I have to allow myself to "tune out" some of those things, and let go of some of the stuff I tend to lay way too much priority on, that I need not. I don't have to have every dish, every towel, every floor, every inch of my car.... all in "perfection" .... some of that type "A" personality, must go... I've had to face that my mind just won't and cannot deal with way too many "irons in the fire" at once. When I do that, then I am more concerned about "doing" other "stuff", then do the "stuff" I WANT and need to do... LOL... no that does not mean I am going to have bare cupboards, do no cooking, never clean, or do laundry, not do all of the daily items, but I can do them in a bit different manner, thus freeing a "chunk" of time up to write, to do my advocacy work, to work on my blog... and so forth... thus that is my plan, and goal... of course like all great ideas, that may not come to fruition either... but I can try... plus I've tended to "neglect" the fact that I am in a GREAT DEAL MORE PAIN, than I wanted to admit to myself and my doctor. There is something going on, whether related to the RA, Lupus, my hips, osteoporosis... or what ever... that is causing me a world of hurt, that was under control for a long while. So, that may mean reconsidering my "autoimmune medications"... and also opting for more medication coming to me from my pain pump, in another small increment. I had it put in around October 2010... and for the 1st year, we "adjusted" it almost monthly... then we got it pretty well working as well as it was going to.... and 2 years ago, I went through another spell, where I was in "intractable" pain... again lower back, hips, legs... we adjusted the medication then, and there has not been a change since that time. So, I did tell my specialist last time he refilled my pump, that I was "jumping up" on the scale of pain... and he did "up" it a tiny bit... which is always how they have to handle it... but even with that, I am still in too much daily pain... and even though I and everyone knows we are NEVER completely "free" of pain... it just does not happen... so... I am going to ask him next week - Jim has an appt with them on Monday, about coming back in and having him "Up' the dose again. From there, I will be probably working with my Rheumatologist on trying a different "combination" of meds for the RA/Lupus.... but I really don't see him until May... yet I can email him, and sometimes he makes changes in between visits, since he is so swamped with research, teaching and seeing patients... that our visits are usually far between... Anyway... that is where I am at this moment... and I shall put one foot in front of the other... (by the way I have MY BOTTOM DENTURES FINISHED A WEEK FROM TODAY!!!!!!)))))) THAT WILL BE A HUGE HELP ALSO.... Thanks all... Rhia Steele​

Advocacy, Ambassador, Activist, Volunteer - All out of a Desire, Passion and Compassion to help others... and the heart of my own dilemma this Annual Arthritis Summit 2015

I have something to share with my dear "Online" and "Off Line" Friends. Each of you have been and continue to be a true inspiration to me. Whether it is about something I write, my books, poetry, my blog, my pursuits as a patient with several chronic illnesses and chronic pain issues, wife, now also a caretaker for Jim after the accident, that will be a year ago March 26th. It seems impossible but most of you recall I was actually at the Arthritis Foundation's Summit on Capitol Hill last year, when I got the "call" that everyone dreads... an accident, all the way back in Dallas, my husband. Basically, "ran over" by an 18--wheel tractor trailer from behind. I am STILL and always WILL BE EXTREMELY THANKFUL for the Kindness, the compassion, the friendship, and the honor that all of the ones there at the Summit, as well as those in the Foundation who helped me get aboard a plane in DC just hours later, headed back to Dallas, to Baylor Hospital. The outcome I was not sure of, and I was so very blessed by those who directly helped me that fateful day. Chris Nieto​ was and still is an angel. He helped me with everything from taking all of the information down from the Emergency Room Trauma doctors, to making sure Laura helped to get me board the plane, and he happened to have been flying back to Dallas himself, so he, Serena, and others from the Summit gave me such a "foundation" to stand upon, as my entire world literally crashed down around me. I look back, and I crumbled to the floor as my daughter told me about the wreck, and Chris began to read off the "numerous" injuries Jim sustained. From almost EVERY RIB broken, to his back basically "broken in two" - - from C-7 through T-7 back surgery done within hours of the accident. A concussion, fracture of the shoulder, possibly a leg, a "nick" in the aorta, and the list just read on and on.... Anyway, all of 2014, we spent either with him in the hospital and the rehab hospital over 3 months. Then several more months of going back and forth several times weekly for rehab... and just a score of doctors visits... plus of course all of the "red tape" that yet has not been settled...

So, moving forward... I was HONORED to be given such an incredible title in my advocacy work, as "Platinum Ambassador" for the Arthritis Foundation. I spent time when I was not either ill myself, or having all of my teeth pulled, and replaced, or any number of other things, to be able to attend the "conference" meetings, make some relationships with some of our Congress People, and do all I could with a true passion to HELP ALL of those out there like myself, suffering from these dreadful diseases....

After my DC visit in 2014, I was so totally elated and felt so privileged to perform one of my "long time" dreams, and that is to "stand on the White house steps" and TELL MY STORY! Well, that dream came true last year in March, 2014. My plans were also to BE BACK  this year in just two weeks, and again be able to STAND with such an INCREDIBLE Foundation as the Arthritis Foundation, and be a part of their wonderful advocates!. When I found out at the very end of 2014 in December or so, that I WOULD BE ABLE TO GO back to DC I was on "cloud ninety nine"!  Of course, my health has waxed and waned, I still have yet to COMPLETE my entire ordeal of these "mini dental pins" in my bottom dentures... due to all kinds of complications, including an "oral-maxillary communication" in other words a "hole" between my mouth and my sinus cavity... and infections etc... yet, I had bought new boots, had all of my clothes lined up, my "ducks in a row" all ready to go back to DC in two weeks!!!

Well, these illnesses "don't care"... they don't care if YOU have PLANS... they don't care if you have to "miss" something you so want to do, they don't care what else is going on in your life...  if "they" decide you will be sick, then sick it is... YES, you can try and push through it, you can try to ignore a flare, or not deal with medications, or not rest, and just do as you wish. But, when it is time for a chronic illness/pain issue arises, it WILL put you DOWN... and you have no choice... you cancel parties, plans, dinners, you don't celebrate holidays when you should, or you miss birthday plans... as we speak of often in the "spoon theory"... you have so many, and you can "borrow" a few... but when there are none, there are none.... thus... due to my own personal bout with several health issues due to the RA, Lupus, Sjogren's, and so forth, my "health" has been not so great, and I've been trying my best to "ignore" the ugly truth... but much to my disappointment... I am still not well, I probably am going to go through some major medication changes, now I am FINALLY going to have the bottom dentures pinned... after all these months of waiting... and not being able to eat much, or if I talk much, the bottom ones slip and slide around thus, I have heck even keeping the top ones from slipping also... my pain level has jumped through the roof. We are not sure if it is lower back disc compression fractures due to the osteoporosis, the RA and my hips, other leg, nerve issues, or what... plus I have just all of a sudden soared in having several Lupus Migraines... they have gotten so bad... and with Jim not able to drive, and his own medical issues with the  Paraplegia causing bad balance problems, where he can't bend forward, or he would fall, he can't go down stairs without help, there are just many things we take for granted daily, that after something like his accident, are things that are just not possible, no matter how small they may seem. He is not able to get things if they are pushed back far into the Fridge, or in a cabinet. He can't climb up to get things out of our very top cabinets... and so that makes it also very difficult for me to be gone for several days... we thought we had that all taken care of, and that person now is having some other family medical issues, thus I don't have them to come and help him out while I am gone, as we thought. So, between all of the "little things", the big "elephant" in the room of course is... I with very deep sorrow and disappointment, must bow down and not go physically to the Arthritis Summit this year. It took me over a week of crying, kicking myself, feeling guilty, being mad, sad, and all of the other billion emotions wrapped around this for me to just have to admit that I am just not physically able, and with family things also, to go this year. I will of course be ON BOARD 500% as and "E-Summit" Attendee... and PLEASE ALL OF YOU take a moment, and go to the link I have provided several times and send in your letter. They WILL BE HAND DELIVERED to YOUR Representative. So, it is vital you get to say your own personal things about these dreadful and unacceptable diseases. I hope to be able to "pinch" myself, and wake up from this nightmare... but no - not a nightmare... it is just the truth and I had to face it... one thing I have "gleaned" (honestly many) but one thing that I have learned about my personal advocacy, activist, volunteer and ambassador work, is that it comes from A VERY DEEP PASSION AND DRIVE and it just as important if not MORE IMPORTANT than a "regular job" People that do this type of thing do it from their hearts, minds and spirits.... we "live" to help others... no "glory"... no "personal gain" honestly... but out of the sheer passion of knowing WE HELPED - WE GAVE VOICE to a patient, or patients... that is WHY MOST of us do this... out of the desire, love and compassion to help others feel better, and live a better quality of life....

Rhia

Please see this URL to SEND IN YOUR LETTERS!!!

http://www.arthritis.org/advocate/advocacy-summit/virtual-summit/letters.php?utm_source=LetterWriter&utm_medium=email&utm_term=Advocacy&utm_content=body&utm_campaign=031115

 

National Institute of Arthritis and Musculoskeletal and Skin Diseases

National Institute of Arthritis and Musculoskeletal and Skin Diseases

American Autoimmune Related Diseases Association’s Statement on FDA’s Approval of First U.S. Biosimilar Drug

American Autoimmune Related Diseases Association’s Statement on FDA’s Approval of First U.S. Biosimilar Drug

How DO You Deal with Doctor's Offices, especially the Nurses and Staff When they just REFUSE to HELP YOU get proper care

It it to the point we sometimes must question "why" our doctors, dentists, an other medical professionals get into the business of "patient care". My family has had several events over the past month, and 99 percent of it all, is due to "lack of doing their job properly"! Of course we had the horrible weather in the area for several days over a couple of weeks prior, but all of that has been behind us since last Friday at the very least. I had to make the TWO trips to Dallas, two days in a row, because my internal pain pump, although "refilled" seemed to not have been "updated" properly. Thus it was not set correctly to give the proper dose of medication and so forth. I had to drive like a bat out of heck... trying to NOT get a ticket, because they were closing early that day, and I had to have it done, due to the fact they were not going to be there from like a Friday to the following Monday. So, I through my teeth in, jumped into some jeans and a shirt and headed that way. Well, I got there within about 45 minutes. Traffic happened to have been good at the time. I told the receptionist I was there, and to let the woman that would get this resolved I was there. Well, they had a waiting room full, but they were coming and going pretty quickly. The nurse came out at least 6 times, and I was sitting in the chair RIGHT BESIDE the door to the inside offices! So, there was no way she could miss me. So, over an hour passed and they were almost ready to go to lunch! Finally the nurse comes out and says, "Gosh I didn't see you!" WE thought you had not made it yet.... duh!!! Really!? So, I go in finally, get that done, and was back on my way home... but rather than being a couple of hours, it was more like 4 since the receptionist never told the woman in the back.
So, the week before that is when we had all of the really terrible snow, ice, sleet, especially in the Dallas area. Many offices including that doctors office was closed off and on during that week, and then the next also... but I had called my medication in - giving them PLENTY of time BEFORE the weather got too bad, to send the script over to the specialty pharmacy so they could get it out in priority mail. That would have came in within a day or two at the latest. Well, I never heard back, and this was like 3 days after leaving messages both with the doctors office and the pharmacy. When I would call the doctors office, all I got was recordings. Yet, they never mentioned they were out due to weather, no one ever called any patients... they just "assumed" we as patients would either "not come in" for appts, etc. Talk about nuts!!! Some people travel several hours away to see him... and to think I go and it takes about an hour... and that is bad enough... so this was like a Wednesday. I called through Friday and never got a soul on the phone, and no one answered any of my messages. On Monday, I call, and leave word again. I had checked with the pharmacy and they had not received a script yet. Then, they were the ones who first told me that the doctors office had been closed off and on for several days, and didn't get many of the scripts out! So, I call AGAIN the following WEDNESDAY, a week later (and I was to run out of medication on that Sat/Sun BEFORE) and finally I get someone to call me, and tell me "Oh it is not your fault, we just weren't open due to the weather"... no duh? Really!!? And not one person thought to try and get a list of patients and call them... it is just nuts... It took a over a week, several phone calls later, and I finally got my medication. So, last week Jim's monthly visit and to pick up scripts was supposed to be I believe Wednesday. Well, he calls because that was the day here the weather was horrible. Snow, Ice, Sleet... both here and Dallas were no place to drive... so he tries to call them and again, no answer, no message saying a word about being open, closed, etc... nothing... it is NOW Wednesday! They promised him last Friday they would mail his scripts to us, and set his appt up for later in the month. We asked them to at least send it priority mail, and oh no they didn't want to be put out that much, and besides they had told us they would be open last Friday afternoon (they usually close on Friday at lunch and only work half a day) so we asked if we could drive up and get the scripts... well NO they were NOT going to stay open Friday afternoon after all... they changed their minds. Okay, well Jim is running out of meds, and they promise they will go out Friday, and we should get the scripts if not Saturday, by Monday at the latest. YESTERDAY!!!! Tuesday! NO SCRIPTS!!!! NaDA! He calls, and the nurse tells him, well we mailed them on Friday, but we think the mail man didn't pick them up until Saturday!!!!!!! You have got to be kidding me!? So, we shall see once again a WEEK later than this should be, actually more than that for him... but those scripts better arrive.... this is insanity.... and if they would have DONE THEIR JOB right away, like with mine... I would have had my medication right on time, no problems... and so would Jim... but it is like they just don't care! Well, if you "hate" your job, or just don't want to do it, and don't care that people can get extremely ill, wind up in the ER, suffer needless pain... for more than just a day...or more than once.... but several times.. and each time I gripe (because it is usually ONE of the nurses that pulls this and we know it) - she does it I think for spite... yet even though I had been told she was being "replaced" that was months and months ago... and she is STILL doing the same thing.... It sucks....


PLUS>>> I can guarantee you, this doctors office has all kinds of signs posted about "what they will and will NOT do" if you don't make an appt on time, or don't call in ahead to cancel, or whatever... they will charge either an entire VISIT, or they may deny you medications, until you "reschedule" AND come in for the visit. Even if you are 10 minutes LATE (usually I am on time, but I have had to call and let them know I am stuck in traffic)... and all kinds of if's, and or but.... if the "patient" does NOT comply!

What about the PATIENTS TIME?! When you go to a physician, especially out of town, that is YOUR time... you get there, you are on time, and then you sit and wait for 5 hours! I've seen it happen to us even right here at our PCP office! He would be hours late, keeping you sitting in a cold cramped room, not even have a nurse to come in and say why.... but that is supposed to be OKAY?! OUR time is just as important as their time... we also have family, jobs, other schedules and appts. in our daily lives also.... it has always been beyond me to see some of the ridiculous stuff the medical profession will state to "patients"... yet it seems we have no "recourse"... if it happens to us....

Another great example just recently for me again. I called my dentist office LAST WEEK! I wanted to make sure I had the "dollar amount" right to finish up my "mini implanted" pins for the bottom dentures. I have the "treatment plan" that was initially drawn up BY THE DENTIST HIMSELF! We in fact, due to "HIS" mistake, paid for 11 MORE TEETH at $147.00 EACH to be pulled after my dentures came in and all of the back teeth were gone! By then, I had no choice! I couldn't just walk away and say forget it. Here are my full set of dentures, that I have to have... already have paid thousands out of pocket to get this far... and yet even though HE LEFT THAT OFF THE TREATMENT PLAN - about CHARGING for EACH TOOTH left in front when my dentures came in!!! I could NOT get them to come down, to give us a break on the price... you add it up $147.00 x 11!!!! NOt Cheap and WELL ABOVE AND BEYOND what I "agreed" to when I signed that treatment plan..of course they "had me over a barrel" by then! If I went somewhere else, I am not sure any other dentist would have touched me since this other one had so far done all of the work!PLUS my new dentures were sitting there, that gosh cost (just themselves) almost $3,000.00!!! And they can't be in unless the rest of those teeth are out! So? I am stuck, whichever way I turn... thus again, they get their way...

So, before the dentures were put in and while he was pulling some of my top molars, a piece of "bone" between my maxillary sinus PASSAGE and MY MOUTH!!! I WOULD GO TO RINSE MY mouth out and WATER would pour out of my nose!!! So, I called, went in and he felt like it would "close itself" off. So, I was put on another month worth of antibiotics, and we "hoped" it would seal itself off. Now, this is also where he had to "split my gums" and then they were sewn back together, and he removed stitches 10 days later... so it was "sealed" with sutures initially.

Well, weeks went by, and nothing stopped. Same thing, between the "air" I could hear coming in and out, and the "feeling" of water from my mouth, to the sinus cavity, to my nose... it kept happening. We waited about 8 weeks, and he decided to go another procedure, to close it off. It was called a "buccal" flap (and here is a very good look at what the heck was going on and can lead to scar tissue in the sinus passage etc...  http://www.surgical-dentistry.info/files/Closure_of_OAF_with_buccal_flap.jpg

So, I went through that and believe me, he gave me "gas" BUT THAT DID NOTHING!! This was a painful scary process sitting in a dentist chair. Honestly, at that time when I think about it, he should have immediately sent me to a "true trained ORAL SURGEON)... one that could have at least given me "twilight" or something... it was nuts... But I went through it...

again stitches, and again taken out 7 to 10 days later... well guess what??? Nothing closed... EVEN WITH my new dentures in, covering it over... (now this had been like 4 months at least) and it didn't fix it..

Well, next is a "bone implant or graft".... and he was sending me to what I thought was an M.D. - a "true oral surgeon" like that can put you to sleep in an "OR" setting... I went and had my wisdom teeth cut out at 19 years old at the Baylor Dental College, and the head Oral Surgeon did my surgery.... and I was expecting to see someone like that... besides if I had gone there, my "insurance" since this was not caused by a "dental" but "physical illness - Sjogren's) may have paid for some of it...

But, he sends me to an idiot about 25 miles away, that is a crazy person. First, they told me NO CHARGE for me to come in and be seen and have a consultation. 2nd I had just had Xrays done of that area less than a week or two before showing the bone piece missing, which was about almost an inch between the maxillary sinus and my mouth.... but he insists on taking another Xray - and then charges me almost 200.00!!! too do NOTHING! HE wanted (HONEST to the Lord) to DO THE EXACT SAME THING MY DENTIST DID THAT FAILED! PLUS he knew nothing about "Sjogren's" and less about autoimmune illnesses, and he acted scared to even touch me, due to all of my "medical issues".... so again here I am STUCK... if I DON'T PAY UP, then there goes my credit score... he absolutely (and he is another one I sat waiting on him until after 5 pm in the evening, and my appt was like at 2pm).... and he could not do a damned thing to help me... PLUS he tried to go ahead and schedule the procedure.. and told me it would cost about 3,500.00!!!!!! NOPE you read that right!!! $3,500.00!!! REALLY!!!???!! You have to be joking right..?

I literally hurried paid, AND ALMOST RAN TO MY CAR... I felt like I was in the "Twilight Zone" of hell with dentists!!!!! Nuts, insane, no compassion, no care... and he is old as Methuselah... he had been a "dentist" for eons...


As I drove back home, late in the evening, my husband and family worried... I finally jumped on the cell, and told my husband I was fine, mad but on my way home....

Again though, no RECOURSE!!! Where are those PATIENT RIGHTS!!?? I sure as hell have not seen them.... and there are more, but these really stick out...

Now back to my "current" dental status. I called last FRIDAY, to get the proper charge, and make an appointment (by the way after about 6 months enough scar tissue filled that hole, and even though the bone is probably still missing, the air and any liquid seems to not be coming through... but it took it that long to seal itself over... and that is insanity... I could have and already had massive issues, with lots of maxillary scar tissue in that sinus passage. I had been told that after having a CT scan of my head and neck... they could see the chronic scarring from one sinus infection after the other when I was a bit younger.... but I could have had a massive infection, and/or all kinds of things can happen when you leave that "open" for bacteria etc to get in.... it could have even caused osteomyelitis... or a bone infection.... that URL above will give you a good look into why that was nothing to mess with....

Okay, it is NOW WEDNESDAY of the following week! The receptionist had the audacity to tell me, "Well, that plan was done almost a year ago" and prices have went up! WHAT!!??? So, she said she would talk to the "office manager" and call me back... well, here it is almost again a week later... no call... nothing...

and again, what is my recourse....???? Those mini pins HAVE to be put in because my bottom dentures WILL NOT STAY IN PLACE without them! So, they have to be "modified" to snap down onto those pins, and until that is also done, my top dentures tend to "move around" if I am not careful. Even with the "Fixodent" powder, and everything like "training" your muscles to help hold them in... if I allow my mouth to dry out in the least way, or I have a long conversation, or if something "gets under" that top denture due to the bottom one shifting around, they both will literally fall out!!

How the hell can I deal with that? Plus I am NOT able to EAT PROPERLY YET! I can't "chew" most stuff, but very little on one side... I have had to stop eating many things that are healthy and I love... many fresh fruit, veggies, just so many things that I think I "might" be able to eat, and there is no way... either the dentures move, or something happens so if they don't line up, then there is no way to chew food... I can't bite anything off. I have to even take lettuce and Jim cuts it up almost like it is chopped parsley or something tiny, just so I can have salad... but things like cucumbers... forget it, can't eat apples, no matter how small I cut them up... it is insanity....

Fatigue, Stress, Pain and the Realms of Autoimmune Illnesses bringing on more or worsened flares

I had just read and article about how many of the medications used for RA; along with Lupus, Sjogren's and many of the other autoimmune illnesses can possibly lessen the disease progression, when it comes to the joints, organs, and body. Yet, there is still a huge issue, that seems is not often controlled, or controlled enough with these. That is fatigue.

Fatigue, and I am speaking of the bone-tired, extremely weary, almost daily type of severe fatigue, that sleep, rest, nor many of the medications we use help or help enough. Those of us with Autoimmune illnesses know this so well. Even though our "minds" want to give us that extra "push" of energy, just like the "spoons" theory, or any type of "idea" such as comparing how many "units" of energy we have, it at times seems to never be enough. We run out of physical "steam" long before we complete all of the tasks we wish to.

It can bring a spiral of feelings and emotions when this happens. Guilt, hopelessness, feeling "less than", or as if you are letting a spouse, job, family, friends and yourself "down" because you just cannot shake that bone tiredness.

Even though we have many things that are out there to help try to battle the bone tired fatigue, and the almost unbearable pain at times, we still are never quite "over" it... or have total relief from any of it.

I've tried to envision having a period of "remission" since day one of finding out about the autoimmune illnesses/syndromes. I really can't think of any "long period of time" that "all" symptoms were gone. It just has not happened. I feel I battle 1,2,3 or more symptoms all the time. They are there underlying, waiting on the time when I am most vulnerable, and then come on with a stronghold.

It matters not, if it is Lupus, RA, Sjogren's, Raynaud's, Pernicious Anemia, MS... and the list goes on for 100's of different AI illnesses, one of them are always right in my face, setting on my shoulders, making my body scream out... I may not "scream" out loud, but my BODY is begging for a "vacation", a time of NO symptoms, to be let off the hook, to take a sabatical from the aches, pains, mental fog, fatigue, rashes, mouth ulcers, skin problems... all of them or even one of them feel like I could just lose it at any given moment. The old adage that we are never given more than we can bear... some of that maybe true... but when you are truly suffering from a daily, moment, hour, minute, breaths space, or with each step you take, something feels wrong. You "feel" whether physically, mentally, emotionally, or any of the combination of those may just push you right over the cliff! I went through that with the most horrid migraine headaches for many, many years. From the time I turned 17 until about 7 years ago, those headaches ruled my life for the most part.

I might be out headache free, whether working, dancing, out shopping, cleaning house, or whatever, and be hit with such a vengance of pain and nausea, that all I could think of, is whatever it takes - GET RID of this FREAKING HEADACHE!!!! Anyone who has any types of these headaches, or those that deal with chronic pain and/or illness(es) can totally relate. I have honestly heard of some with such intractable pain that take their own lives. They have reached a place that being on Earth they feel is just hell... and nothing will ever change that. I never thought I would be able to go even a week without one of the damned things. And I spent many day and nights, either at home, sick as a dog with them, or sick at work, with my head on the desk, or in the ER, begging for them to just make it stop. I went through every type of treatment, doctor, and medication known to man for them at the time. From pain medications (Butalbital) was one my doctors used quite a bit back then, to chiropractors, PT, other stronger pain medications, to an Ergot(which I am highly NOT able to take especially due to my reaction that I had, then my heart attacks) , to having the occipital nerves in the back of my neck injected... you name it, I tried it... and nothing really "worked"... some of them would at least get me to a place that I could withstand the severity of the pain and nausea, but other than when I was pregnant with my son, then 5 year later with my daughter, I thought I would bear the burden of those things on my back until eternity.

Well, I suffered for many years. They would wax and wane... from time to time, I would find deliverance from them, and other times, I felt I was constantly battling a severe headache. Yet, when I FINALLY begin to get treatment for the Autoimmune Illnesses, had several joint replacements, including a shoulder, and also surgery on the other shoulder and elbow... and also cervical neck surgery... and the adding of an incredible pain specialist, now I have what I call a "Lupus Migraine"... they come on when I flare badly with the Lupus. Yet, usually an injection of a corticosteroid, like Solu-Medrol will knock them out. It make take a few days, usually at least 2 days, sometimes 3... with that and then the "high step down dose" of prednisone for 10 to 14 days, will remedy one, until I flare again. I've learned over the years, that just like arthritis, autoimmune illnesses, chronic pain, joint issues... when the WEATHER acts up, you can bet I will have a severe headache, and of course usually the joint pain, stiffness, etc... all come on with high humidity, a dramatic change in the barometric pressure, a dramatic drop or rise in temperature, etc... 99% of the time, can be "diagnosed" by many of us before the weather even reaches us.

So, my own conclusion now about the migraines that I have are "inflammatory" headaches. That is why a corticosteroid injection can get them under control, whereas regular "pain medications" no matter how strong or weak... just will not reduce that inflammatory process behind a "Lupus Migraine"... and FYI that is MY OPINION... and what I have gleamed from them, and the injections. So, I don't know if physicians would agree, but I do know my PCP, takes me seriously. When I call with one of these headaches, he has me immediately come in, get the injection and the script for the step down dose of Prednisone.

Why the headaches somewhat "improved"... well improved is not really the term, they have "changed"... who knows... possibly any and all of the things that have come about with the AI and chronic pain issues... I just know now... or usually (I have had an extremely bad one, and I am not shaking it as quickly as usual.

But, I could probably name dozens of reasons of why they have migrated to being different, age, hormones, illnesses, medications, weather, living in a different place, stress, and on and on....

FDA APPROVES 1ST "Biosimilar"! Great News!

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm436648.htm

This is just awesome news! Although this particular one is not related to Autoimmune illness, it is definitely a prosperous beginning to getting "biosimilars" into other types of illnesses, including RA, Sjogren's, Lupus and many of the other 100's of Autoimmune illnesses.

Here is another link that gives you a huge amount of information on Biosimilars. They are NOT a "generic" form of other "Name brand" medications. I am sure many of us are thinking this. But this website below DOES tell all about them, all of the huge non-profits like the AF, IFAA, AARDA, Lupus Foundation and many more that are supporting this effort.

This can mean many more of us that have these illnesses be able to have a more "affordable" type of medication in the near future.

So, take a few moments to look over the website, and also the link above is the news press release for "ZARXIO"....


http://www.biosimsafety.org/pbsamembers/

YOUR VOICE on Capitol Hill at the "Virtual Summit" can be heard! YOU WILL BE HEARD! E-Advocacy and more for the Arthritis Foundation

Okay Guys and Gals!!! I am asking for YOUR Participation in this EXTREMELY IMPORTANT situation. As most of you probably know I have made "Platinum Ambassador" for the Arthritis Foundation for 2014-15. So, I am headed for Washington D.C. March 22, through March 24-25th... for the Annual "Summit on the Hill" by the AF. We will be going personally to Capitol Hill to both the Senate and House of Representatives, to meet with as many of them as we can. If we don't get to meet personally with them, we still usually meet with their "health legislative" assistants, and other staff that can help to deliver our information and message. It is IMPERATIVE THOUGH that ALL OF YOU that can't be there, really and truly KNOW YOUR VOICE COUNTS!!! I know many of us have become disenchanted with "Congress" - our Senators and Representatives for many reasons. Yet, I know PERSONALLY FOR a FACT that YOUR VOICE DOES MATTER!!! I have seen the results of what letters, phone calls, messages, and meetings can do for all of us in the matter of Arthritis, whether osteoarthritis, RA, Juvenile RA, Still's Disease PLUS ALL of our other "Autoimmune" and other health issues. BUT, WE need YOU to also raise your voice and be heard. We will be DELIVERING YOUR LETTERS PERSONALLY to the Senators and Representatives that you can follow from instructions below, and fill in your personal parts, tell your story also, or however you want to personalize it. The Arthritis Foundation NEEDS "Virtual SUMMIT people" and that is YOU. Even if you are going to DC, still please use this letter to be given to your Senators, and Representatives. ONE VOICE can MOVE MOUNTAINS! I have witnessed it, and continue to truly believe we do matter. BUT, if you DON'T contact them, then they do not know your situation and how YOU feel. So, I am posting here, on my blog, on my Pinterest, on my Instagram, on Twitter, everywhere I can about how to be a part of this critical movement! This is for ALL of us, with these horrible illnesses, that need help with getting good physicians, the MEDICATIONS WE NEED and making them AFFORDABLE FOR ALL! This is about those in our nation, many of our Armed Forces Come home with arthritis problems or develop them..... and many of our youngest of this nation are also patients, with Juvenile Arthritis. I want to urge each of you to take a bit of time and send your letters. I am including all of the instructions in an attachment and at the URL that is provided. If you have questions feel free to ask me, either through Facebook, or through message or email me. If you would like me to help or if you have a message you want me to take your letters with me, and I will make sure they get delivered. 

Here is your link to sign on to be an "E-Advocate" for the Arthritis Foundation. This gives you a voice via emails and so forth so you can be heard at the National Congressional Level. It is not time consuming, you don't even have to leave the house, but this is a way to be able to speak up and be heard by your Congressional Leaders that you voted in. Let them know how you feel, and what you feel is good for yourself and the nation when it comes to Arthritis, RA, Osteoarthritis, and ALL of the other diseases that are often in tandum with arthritic illnesses. It takes a few moments to sign up and be heard for the rest of your life by those who can help to make things better in the realms of your health. 

http://www.arthritis.org/ad…/sign-up-to-be-an-e-advocate.php

Then this is how you can "attend" the Annual Summit on the Hill as a member of the "Virtual Summit"... this link provides you with a sample letter that you can also personalize, add your picture, and tell your story about your health issues when it comes to arthritis, whether a patient, caretaker, family member, or just want to be a "voice" to help others.

 http://www.arthritis.org/.../virtual-summit/letters.php

 

You can download the "letter" from that link, and all of the instructions are there so you can send it back via email to those that will be taking YOUR letters directly to Congress. WE are giving a VOICE to YOU, even if you can't attend... as I said, if you have questions, need help, or however I can assist you, feel free to email, message me, or post and I will be more than happy to help out in any way I can.

 ALSO!!! SOCIAL MEDIA is a HUGE way to get your messages across. MANY of our Congressional Members have Facebook pages, Twitter, Instagrams, and so forth. That is another way you can also make contact with them, so be sure to also look that up. I have both of my Senators and my Representatives Facebook pages, and I've sent Tweets to them and emails also from their websites. Sign up for their newsletters. That is a great way to find out how to contact them also.

 

Here you go!!! "Proof" is in the "pudding"!!! this study is compelling to show that a few "Tweets" or other type of Social Media use can capture your Leaders Attention on a Subject ...

  http://connectivity.cqrollcall.com/just-a-handful-of.../  

 

Advocacy Summit: Virtual Summit | Arthritis Foundation

Advocacy Summit: Virtual Summit | Arthritis Foundation

Chronic Pain, Illness, Medicare, Disability, Medicare Advantage Plans and the Government Telling Our doctors how to treat us as Patients! WE MUST stand up and make things CHANGE!!!

I didn't get to mention this yesterday due to all of the "drama" surrounding my pain pump ordeal, so I will mention it today. While my pain doctor was working to refill my pump, we began discussing Medicare, medications, insurance, etc. Come to find out there were some people that switched over to a different Medicare Advantage Plan offered by United Healthcare, which AARP endorses. Well, I did my homework for months before switching. I had the Humana Medicare Advantage Plan for several years, well in fact ever since I was put on Medicare. Here in Texas, someone who is put on Medicare "disability" before the age for retirement, has an extremely difficult time getting a regular "supplement" to Medicare. About the only way you can get your "Part B" and drugs covered is by taking a "Medicare Advantage Plan".... so that means you "give up" your regular Medicare benefits, and you take one of these... there are not that many, Humana and United Healthcare are the two main ones. So, that means your choices are very narrow. I worked for months checking out the United Healthcare plan before I switched on January 1st. I got online, added all of my doctors, added all of my medications... to see if they were covered. I also called United and spoke to a gentleman there, that stayed on the phone with me about an hour. We again, went through my doctors that I presently see, through all of my medications, including the Orencia. At the time last year, Humana did NOT cover Orencia. So, I had to get it through the pharmaceutical company, which we know is time consuming and full of red tape paperwork, for the patient and the doctors. I had finally gotten on it, but then at the first of the year, they wanted to redo all the paperwork. Well, after I jumped through hoops for weeks, calling them, finding out what they needed, faxing paperwork to my doctors office, faxing paperwork to the Pharmaceutical company, I come to find out that United Healthcare DOES COVER the Orencia. So, then I had to get the "prior authorization" again from the doctor, but after about 4 weeks of being without my medication, it was finally approved and in fact they sent me 3 months of Orencia. So, I don't have to jump through hoops, and should be good until next year as far as that goes. BUT, now we have an issue, that it seems the Orencia is not working. In fact Rheumatologist called me a week or so ago, and I had told him in an email that I was not better, so he doubled my Prednisone to 10 mg daily, which I really hated to do, but it sounded like it maybe a way to see if that would help the inflammation. Anyway, onto the subject at hand. As my doctor was refilling my pump, he asked me about my United Healthcare Plan. I told him it was one that that had told me they would take, so it was the one I chose. I was very worried about them paying for the pump refill. but, I guess it got approved. BUT, HE told me, that some of his patients that took out a "Unitedhealthcare" Medicare Advantage Plan policy, got a "new card" at the first of February, and that their pump refills among other things were NOT COVERED!!! He said about 20% of the patients on these plans somehow got screwed over, and now they can't get their pumps refilled by him!!!! So, when I told him about going to the Summit in March at the end of the month, he told me to tell it like it is, and tell them how badly they are ruining things for patients, doctors, and putting patients lives in the throws of jeopardy. It seems somehow they automatically "switched" some patients from the plan they thought they got, and then got new cards, and it was NOT the plan they thought they were getting!!! This absolutely has to do with Medicare, the Government, and also not just Federal Government but our State governments also. I should be able to get a "Medicare Supplement" just like anyone on Medicare, but here in TX, they "make you" almost take the Advantage Plan instead. Even though there are about 8 or 9 different types of supplement plans, all in letters like Plans, F, G, O, etc... and they are some more expensive because they cover more and some don't cover as much, so those plans are cheaper. None of them are "cheap" but then you are not dealing with many doctors who are refusing to take these (MAP) due to them not getting paid!!! He told me before there were a couple of patients he did very expensive surgeries on, like an implanted pump, and it took him over 2 years to get paid and then he had to go in front of a judge to get them to pay the bills. No doctors can continue to see patients and keep afloat financially if they are having to wait, 3, 6, 9 months or more to get paid for services!!!! It is crazy! So, he looked at my Insurance Card, and said I was okay. But, he said again almost 20% of the patients he sees are on these plans, and this one in particular they won't pay for the pump refills. Also, I asked well can't they just pay cash and have you refill them! He said as far as he knew and he does NOT know why, but NO, if those types of plans do NOT cover something, a patient cannot "pay" out of pocket to have it done!!! NOW HOW STUPID IS THAT???? What difference does it make, if the insurance won't pay, then they patient should be allowed to pay for it!!!! Things are going to get much worse before they get better. I fear I maybe facing either hip surgery(ies) or finding out I have compressed discs in my back from the osteoporosis or something is going on. My pain levels have just shot up immensely, and it seems we cannot get it back under control for some reason. Something is causing my problems, and I am sure it means X-Rays and CT Scans to try and see if something is going on... I cannot have an MRI at all, so that makes it a bit harder. Anyway, he always keeps up with what is going on especially with Medicare, the Advantage Plans and the government..... many doctors don't really keep up so they have no clue what goes on with patients and trying to get things covered!!!

I am totally fed up with it all. It seems every day I battle with these ridiculous headaches. There for a good while, I went for months and months and the only "headache" I would have is a Lupus Migraine, as I called it. I could go in and see my PCP (and in fact I see him tomorrow) have an injection of a corticosteroid and within about 24 to 36 hours the headache would be gone. I've had almost a none stop headache now for at least 3 weeks. As long as I don't move around a great deal, and are not up doing things, it settles down. Yet, as soon as I am up and moving around, or even setting here trying to type my head is just pounding. I've yet to understand why the very sudden change in the headaches honestly. I've tried to research it out, and of course since I've had migraines off and on all my life, there maybe times I go through this process of having them and the they go away for awhile.