Showing posts with label doctors. Show all posts
Showing posts with label doctors. Show all posts

Thursday, July 12, 2018

Weather, Chronic Pain, Pain Pain and MORE PAIN!

Any and everyone of us here, there and yonder, knows how much the "weather" can effect chronic pain. Other illnesses such as Lupus, RA, Osteoarthritis, Joint replacements, cervical spine surgeries and problems, and many more illnesses are "effected" by weather.

Oddly enough, it was not that many years ago, that I would tell my doctor(s), not that long ago, ONE doctor saw you for just about everything.... that THE WEATHER MADE MY MIGRAINES WORSE! Back then, and as I said NOT that long ago, they would look at me like I was nuts, bonkers, and just needed some reason to "complain", go the the Emergency room for the dreaded Migraines that plagued me from the time I was about 17 years old, until I then began having "Lupus Migraines" about 10 years ago.

Lupus Migraines, as I call them are an entire different "ball game" from regular Migraines. Used to pain medication worked for the other migraines. Even though I had to fight tooth and nail to get it often times, my severe headache, nausea, the grogginess, the feeling of wishing you could remove your head from your body was horrid. Yet pain medications handled the problem, most of the time.

Then when I began having Lupus Migraines, no amount of "regular pain medications" in the world will do a thing for them. I must have a huge injection of corticosteroid, and then 10 to 14 days of Prednisone, the "step down" dose, in order to get rid of that type of Migraine.

Fortunately, getting that help is easier than having to go in for any type of narcotic pain medication. Yet, I still have to have those also, for the other "many chronic daily pains"I dread, must still have my pain pump, and I have pills for "break through" pains, especially during the times when the weather acts nuts, causing it to reek havoc with my entire body. I "had the surgeries" to help rid me of the other pain, from the joints that have just disintegrated over the years. I tried to tell doctors way back in my twenties, that I had "genetic arthritis". Again, although not that many years ago, they just didn't want to accept the fact that "someone as young as I was" could have that bad of joints. Yet, it was true. I tore cartilage out of my knee at 15. But, by the time I was 21 it needed surgery again. Then the other knee, my elbows, my shoulders, all began giving me problems. I had them injected more times than I can count.

After the many, many tests, scans, injections, medications, even was hospitalized for a few days to try a medication that was "dangerous" to my heart, and it didn't do one thing for the headaches.

After having several more joint surgeries by the time I was 35, I began getting through to some doctors, that these problems were not all imaginary, but were truly issues that I probably was born with. I even had double hernia surgery about 4 years ago! The surgeon told me I was probably "born" with those areas "weak" like some infant girls are, and after years of walking, lifting, bending, picking up something heavy and so on, that they finally became fully herniated, and had to be repaired. Even that was a nightmare. I could Feel them, I could SEE them, yet 3 doctors and even a sonogram didn't pick them up. I finally went to a surgeon I trusted and HE could feel and see them. HE knew what to look for, and he also was well aware of some women, were born with those spots weakened. And some went on to develop hernia's that needed repair.

Usually you don't catch me "lying around" or doing basically nothing. I fully believe that laying around, even when you feel like "hammered hell" can just cause you to feel worse, hurt worse, and give you a lack of energy, lack of muscles, an you question, which is better? Am I harming myself worse, by getting up and doing  things? Or am I better off "working through the stiffness, pain, swelling, and all of the side effects that go along with these illnesses?   

What sucks is that although I usually DO feel better up and moving, even if it is slowly, it still at times takes all the energy and will power I can muster these days.  I have people who stare at me when I park in the handicapped place. It's still hard to have "invisible illnesses". As much as is out there about so many of us suffering, with these horrid diseases, yet there are still "uneducated", "mean", selfish people that want to make fun of, or cause us more grief that we already deal with on any given day. Just sitting here trying to type had caused my wrists, my upper back, my hips, all to hurt like hell.

So, me now trying to sit down and write a 3rd book, when I need to spend HOURS typing it out, almost seems as if it will never happen.                                                                                                                                                   

Saturday, April 28, 2018

Fed Up With Pharmacists, Doctor's, Lupus, Medications and Fed up with too many side effects! Loving Fishing, and Better Weather


Was out at the lake yesterday, but the wind picked up the wrong direction and I had to come home. I can't stand in the sun due to the Lupus and meds etc... and I HOPE I finally have some sunblock for my FACE that DOES not cause breakouts. I FINALLY ALSO GOT HUMANA AFTER 4 WEEKS OVERDUE OF MY RA MEDICATION BACK ON TRACK! THEY ARE SUPPOSED TO DELIVER IT TUESDAY! I hope so, my fingers, THUMBS ARE THE WORST, WRISTS, ANKLES, EVERYTHING IS SO STIFF, HURTS, I COULD NOT EVEN BUTTON OR UNBUTTON MY JEANS OR ANYTHING THESE PAST FEW DAYS... 

I can't cut up fruit, and even trying to be out yesterday cutting a few tree branches down for the trash, I accidentally hit one of the branches on my leg, and it was just a little nick, and it bled everywhere. I had to come in and I already have spots on that foot and ankle where mosquito's bit me and it itched so badly, I've got a rash where I scratched it in the night... So I've had to bandage up my foot so much it looks like I cut off half my foot!!! And it's just a few scratches mainly, but if I don't the pups want to lick it, and then I was outside this morning, weed eating and spraying the weeds in the back, raking up and so forth. So, I fear infection so badly. Ever since the incident on both thighs where I had the cellulitis, that turned into "holes" in my legs, and I still have terrible scars, that although I went to the wound care people for 6 weeks in Dallas, they still never really healed where they covered over and look nice. I am almost embarrassed. Between those, the cuts on my knees from the replacements, and now for some reason, I have "spider" veins so badly in my ankles they look horrible!!! And it is so odd, I never had any problems, then about a year ago or more, 

I began getting them all over both ankles. I don't know if me spraining them so badly, that Sunday of Mom's funeral, and I had already sprained the right one twice before, if they "broke" those vessels that badly or what, but they are so ugly. I've asked the doctors and they told me that insurance probably would not pay for it. But, they also tend to "seep" under the skin, so at times those ankles where the spider veins are so bad will "weep" and cause my ankles to swell. I know they have new treatments now. They used to put saline through them, and they said it hurts like hell. But, now I think they can "laser" them... I am thinking about going back to the foot specialist I saw with my ankles being so badly sprained they would not quit hurting. Plus the right one would swell so much, I could not walk on it. He put an injection of corticosteroids in it, and that really helped to stop the swelling and pain. But, the spider veins make my ankles look like I am an old, old lady! I guess though after all of the surgeries and scars from them, I get to where I don't care if people think they look bad or not! I refuse to COVER UP and burn up and not wear shorts, when it's hot! 

Anyway, been a busy week, and I've been busy every day doing something. I still have not done  that stupid lab work, but it has to be fasting, and I get up so early, I can't go for hours without my coffee or tea... last time I ate breakfast early, then went for 8 hours without food and then went in that afternoon for the blood work, rather then trying to go in at 8AM. And I got kind of peeved at my Cardiologist last week. ^ months ago when I was there, we talked about putting in a pacemaker, due to my heart rate being so slow especially at night. It will be at 43 beats or less at times, and she suggested since I take the medication for the "extra beat" I have she could do the pacemaker. But, of course once it's there it is forever. So, this time she talked about sending me to a "heart rythym" specialist. She said he could possibly try a "different medication" or decide whether to do the pacemaker.. Well I said, 1st of all, I am taking too many meds as it is and I am just about ready to throw them all out the window and use "natural" supplements, because each time we try a new medication, I have problems from it. Then she admitted she DID NOT do the "medications" this specialist does "because there are so many side effects"... so I said well then, "if" I decide I am "bothered" too much by the arrythymia THEN she could DO THE PACEMAKER AS WE ALREADY TALKED ABOUT! She was the one who just told me 6 months ago,, the pacemaker was the simplest way to "correct" the slow heart rate!!!!! So, WHY WOULD I GO TO YET ANOTHER SPECIALIST, THAT FIRST OF ALL UNLESS IT'S LIFE OR DEATH, I AM NOT TAKING ANY NEW MEDICATIONS!!! I am FED UP WITH THEM, AND ALL OF THE SIDE EFFECTS THEY CAUSE!!! 2ND OF ALL, she can do the pacemaker right here in my hometown, as a day surgery, and I can go home in a few hours. I DO NOT NEED OR WANT YET ANOTHER "SPECIALIST" THAT I HAVE TO GO TO DALLAS AND TRAVEL TO SEE! It's bad enough with the Rheumy, Pain doctor, and the Orthopedic surgeon, without adding to the list!!!!!

Tuesday, October 31, 2017

LOTS of things going on... here is just a bit of an update on some of my Ordeal! Cars, Taking care of a Home, with you are "disabled" and by yourself, warranties, doctors, lab tests and you name it!

I've not said much about what all has been going on over the past 2 weeks... I had several "decisions" I really needed to make, especially after getting "scammed" over the whole having my home painted, boards repaired and so forth, and yet he got away with MUCH MORE money than the job was worth for sure. I am in the process of filing a "civil suit" against him, but I am sure I probably won't see a dime of money, nor any more work done... so I've been doing "as much as I can" to get it finished, plus I've got trees that are still in desperate need of getting really pruned back or I fear I will lose them, and I have no 2 or 3 in a row in the back on the same fence line that have all died. One of them in the past 2 weeks or so suddenly, what I thought was just "winterizing" itself, no, a huge portion of it is dead I believe, and I am not sure what the heck is going on. There is a huge one that died and i still don't have it all down... 

right beside it, then another smaller one, plus the "neighbors" on one side of me put up a "privacy fence" and I know "why" but I will keep quiet at the moment, BUT, it was further into the "back lot" so I didn't know about it, which is fine, BUT THEY EITHER KILLED A TREE, OR SOMETHING AND IT IS ON THEIR SIDE OF THAT FENCE, BUT THE ENTIRE TREE THAT IS DEAD FELL ON MY PROPERTY ON THIS SIDE OF THE FENCE! I WAS so pissed, but the other is not much better. They built the HUGE GARAGE, that now with no rain, the "foundation" has pulled away from the ground all around it, which really does not matter to me, 

BUT HE WAS SUPPOSED TO DO AWAY WITH ALL OF THE JUNK, that was in the two "sheds" and i mean LOADS AND LOADS OF JUNK, they hauled away flat bed trailers full several times, yet rather than get rid of it all, HE BUILT THE GARAGE THEN STILL HAS A HUGE PILE OF NOTHING BUT JUNK BEHIND IT! Well in the first place, he was supposed to get rid of all of that, and in the 2nd I NOW SEE IT, SINCE THERE IS NO FENCE, AND THOSE OLD BUILDINGS THAT WERE KIND OF THE FENCE ARE GONE, and part of those dead trees are on his property line, so now I think that is where lots of the problems are coming from with mice, and Lord knows snakes and everything else, piled within and under all of this "stuff" that I cannot fathom to even wonder about... anyway I got "rid" of Leasing and "bought" my car permanently, a good move since the interest rate was .9% (less than 1 %)!!!! and now I don't have to worry over when this one is paid for, no more "leasing" or decisions, it's mine, and that is just how it is... 

anyway, more money than I really wanted once again to have to think about dealing with, but a good move in order to avoid either paying "out the lease" in 24 more months OR leasing again and so forth... my ceiling fan (new one) new enough I put it up I believe last summer before I fell and broke my hip... I thought it was a $6.00 part and I ordered it, replaced it, even had my son "recheck" to make sure I was correct, and THE DAMNED THING HUMS, BUT WON'T TURN THE BLADES, so I had to buy another damned ceiling fan, this time, I got it from Home Depot and got an extended warranty on it... I usually never do that, but now with my situation as it is, and I no longer can put the thing up myself, and besides they are much more expensive than the others I bought, so at least the thing is covered for 5 years or more... so if something goes out, at least it will be replaced, without me being out another load of money again.... and I didn't go to the "GI' doctor today... the weather is horrible, and we are supposed to have rain at any moment, and with it being Halloween, and terrible weather moving in, and I already am not feeling very well. In fact, I "thought" I may have "pneumonia" or some type of sinus infection or something.. This weather is really causing many people to get sick all of a sudden...

I was wearing shorts and a sleeveless top not a week ago, and yesterday it was a beautiful day, but the wind was so cool, that it makes me have problems breathing to get in that cold wind, and today, now it looks like it is going to come a flood at any moment, dreary and really cool, not as windy but the wind is also almost cold, with it cloudy like it is.... so we know TX weather, burn up one moment, in an hour be freezing... so here is my 2018 Prius C - this one happens to have everything but the "kitchen sink" in it, but I was not thrilled with the "black pearl" color.... any "darker" color cars in hot TX weather, just really suck... but it was almost less expensive than the 2016, and has a lot more things upgraded, even the rims and wheels, it has a GPS system, back up system, it tells me if I "get out of my lane" high beams that will "dim" on oncoming traffic themselves, and even has XMsirus radio I noticed, and "Gracenote"... and with that I will NOTE, I BROUGHT THE MANUALS IN FOR IT YESTERDAY, AND NO CRAP THEY ARE ABOUT ALL TOGETHER 5 INCHES THICK! It would take a "law degree" LOL, to read and understand all of the crap these cars now days do..... so I am somewhat "under the weather" but not just physically, more also emotionally and mentally, with all that has happened in the past about 4 to 6 weeks... I've been upset with myself because I've not been keeping my blog up and so forth. I never allow myself NOT to keep the blog and my newspaper current, but I've been so busy outside everyday trying to finish up as much as I can on the house, that most everything else has been on hold...

Health... Lab Work... and Issues about different doctors', tests and so forth...

Now quickly, I have "developed" a couple of "new issues" that I was NOT thrilled with from the lab work i had done before my appt yesterday. I have never had "thyroid" problems, and they have checked it every 3 months for a long time, but yesterday I do have "High above normal" on my TSH, which I think means my body is "making not enough" or it's not coming from the gland as it should. So, they did another blood test yesterday. We shall see how it comes out. 

My Grandmother and my Aunt on my Mom's side both had thyroid problems, and both took medication for many years. Then my Vitamin "D" levels were very low, which in a way does not make sense. All of the things in my diet that I eat on a regular basis "should" have it up but it's not, and that could be from the RA, Lupus, and/or medications I am on. Plus my Calcium levels are very low, which really does not make sense because i eat low fat cottage cheese, or fat free, yogurt, I use Almond Milk all of which contain lots of Calcium, plus I eat not all the time, but I do eat Sharp Cheddar Cheese when I eat cheese, and I buy the lower in fat on it also, it comes now in 2% milk fat. 

I also have lower Protein levels which again, I am not a "meat eater" but I do eat peanut butter, I made my FIRST BATCH OF MIXED NUT BUTTER OVER THE WEEKEND! It turned out awesome! It will cost me about 50% LESS to buy the nuts, and make it myself, with no added sugars, salts (if I buy unsalted nuts", plus no preservatives, and nothing in it, but NUTS! I did a mixture of Almonds, Cashews, Walnuts, Macadamia nuts, Pistachio nuts, a few pecans, Brazil Nuts, and I think one other one, but no Peanuts in this one, I eat Peanut Butter so I didn't want peanuts in the "other nut butter" as I call it. So, I will probably make both my own Peanut butter and other nut butters from now on. It's easy, and does not take but a few minutes in the food processor. I have to refrigerate it, since it has no preservatives, but I have been doing that anyway.

Then of course my Anemia is still "with me". It is still there, but as my doctor said, it seems to kind of be finally "holding steady" so rather than "set up" something else other than my B-12 injections, we are just watching it. The RA and Lupus cause that also. Then my "Parathyroid" tests were very "High" above normal. I didn't realize that they have a great deal to do with kidney functions. But, Vitamin D (which I am low on) has an effect on the "parathyroid functions" and of course Calcium and Vitamin D effect one another. 

Your body does not absorb "Calcium" as efficiently if the Vit. D is low, I believe. I knew they effect 
one another. So, I am getting a "prescription" strength Vitamin D, and he called in the Calcium also, But, I feel like insurance will not pay for the Calcium, and I remembered that Humana actually pays for like 50.00 in "over the counter" meds if I order them through their mail order service. So, I can get the Calcium through there since I have that allowance I can use to pay for anything that the insurance as far as prescription does not cover. 

He said I show "very, very mild and early" kidney function issues, but again, nothing to worry over, and probably the RA has a great deal to do with that problem. The other thing and it's been going on for a while now is that my "bracycardia" (slow heart beat) was REALLY SLOW YESTERDAY! 49 beats a minute, which is very slow. I know medication they can cause it, but it concerned me. One of my medications for my heart that is a factor in that issue also. I've cut back, way back on one of my medications, because it also causes the heart rate to be slower.
 

The "Barrett's Esophagus" he wants me to see a GI doctor! Dammit, I don't want to have to go to yet another new specialist. I am already up to my ears in specialists and I am sick and tired of having to get a new one for every little thing that comes up. When I had the endoscopy done and they found the Barrett's, my doctor just sent an order over to one of the general surgeon's and I thought that would be enough. THEN if the "Barrett's" shows signs of dysplasia or changes, THEN SEND ME to a specialist. 


Friday, March 10, 2017

A LESSON FOR ALL - NEVER BE AFRAID TO SPEAK UP TO YOUR DOCTORS, PHARMACISTS, NURSES, & MEDICAL PROFESSIONALS!

Taking your own medical knowledge about yourself in your own hands can save you money, time, hassle, and maybe even your LIFE!


Here is my own story:

I think we should FIRE all of the "meteorologists" when it comes to their weather "forecasts"! For two days, the forecast was thunderstorms both yesterday and today... 70 to 80% chance! I had a doctors appt in Dallas yesterday afternoon, and I was concerned since I HAD to go to this one, that I would be in bad weather with BAD drivers, when it comes to Dallas traffic... well, then they forecast that the "thunderstorms" would hold off till "early Friday morning" thus although it looked horrible in the skies over Dallas yesterday, no rain etc really happened. Then I get up this morning to NO thunderstorms in the night, but HIGH HUMIDITY THAT FEELS LIKE A SAUNA OUTSIDE ALREADY! My lawn looks as if we had 4 inches of rain everything is so wet from the humidity! Now today the chances of thunderstorms is just about gone, and a small % of rain maybe. Well, I could have told them days ago, we would NOT have thunderstorms, but we WOULD HAVE HORRIBLE HUMIDITY, along with the Barometric pressure being nuts! MANY of us with "joint problems, back problems, neck, have had joint replacements, have arthritis, and RA, or any type of chronic pain problem, could have gave a better forecast from the way our bodies "feel" than they can watching their radars! LOL!

 I spoke with 3 ladies at my doctors office yesterday, and all 3 said the same thing just about I did about the weather, and how it effects them. Then, I was in for my pain pump to be refilled. So, I go in and he was running about on time, which I was happy about, because my appt was at 2:30PM, and I wanted out of Dallas hopefully BEFORE rush hour... so he finishes up, and he upped my pump and upped me to 5 boluses a day rather than 4 since the hip issues, have caused me to have to delay my neck surgery, back surgery etc... plus now with the hip being repaired and not replaced, (which I wonder why he did not just replace it. Due to me having severe osteoporosis, the "normal" would be to replace it. Now I have a very high chance of having to have it replaced down the road simply because of the RA, Lupus and Osteoporosis) but anyway, now I have more pain up and down that leg, mostly related to my lower lumbar and sacral spine issues that were tweaked, along with my ankle, and my neck when I fell. I did not have that much problem with my back and neck, and the ankle until after the hip was better, then the others began to show themselves. Because I was in so much horrid pain with the fractures of my hip, the others were not as "painful" at the time. Now with the hip repaired, the ankle, my neck and lower back pain have become worse. 

Anyway, he finishes refilling it, and does his thing with the wireless device that "talks" to the pump, but he told me my next "refill date was like in October"! I said that cannot be right! With upping my meds there is no way I would go that many months before needing a refill. So, as he was walking out of the room, I used my own device that "reads" the pump, gives me the information and also allows me to give myself the boluses when they are due... and he had done my "bolus" amount wrong again. It should be 1.15 now for 5 times a day... but he put in .1150 which is a HUGE DIFFERENCE FROM 1.115! Thus the difference... So, I stepped in the hallway and was asking the nurse to have him come back, that I thought there was a problem, and sure enough... he put the decimal in the wrong position. Now my next refill is on June 20th or something like that in June! Which MAKES SENSE! LOL! So, just another NOTE for each of you/. DO NOT BE FRIGHTENED TO QUESTION YOUR DOCTORS OR PHARMACISTS, NURSES ETC... if you FEEL THEIR IS A MISTAKE OR SOMETHING WRONG, SAY SO! It can save you lots of hassle, or may even save your life! Don't feel those like doctors are "God" because they are humans, they do make mistakes... especially with a high number of patients they see now, and all they have to contend with, STOP and speak UP if you feel something is NOT RIGHT!!!!!

Monday, November 14, 2016

WEGO Bloggers Challenge for Saturday 12th - Time to "get real" with your doctor

Saturday Day 12, 2016 - WEGO HEALTH'S BLOGGER'S CHALLENGE - WHAT DO YOU REALLY WANT TO TELL SOME OF YOUR DOCTOR'S AND DON'T HOLD BACK!


Well for one, I am sick and tired of doctors thinking that just because I patient may do research on their illness(es) or look things up, I cannot fathom a doctor getting upset or calling a patient a "moron", Layman, and telling them "you do not know what you are talking about".

I agree there is a OVER ABUNDANCE of some really ridiculous information online for everything! Not just the medical field, but just about anything you want to search for.
One has to learn how to "think" about what you read or hear when it is NOT a specialist, and try to weed out what really is silly, or does not apply to your case.

Plus for myself, when I go into my doctors offices, and ask questions or tell them about something I've read online, often times "most" of my research, is usually almost right on target. Not always, and I have one physician that LOVES and "educated patient".

But, one is a complete jack-ass to put it like it is, he ignores anything I have to say, he tells me I am basically stupid, and leave the "doctoring up to those who do have the "knwledge and education" to do the "medical work".

I SO would love to tell him, that I have been to "some so-called" doctors, that not being narsaccist but I KNE more than they did about some things. When you are chronically ill, many of us DO KNOW more about our conditions than doctors. WE KNOW our bodies, we know what feels right and what feels wrong. We understand the articles, even bloggers posts we read, and they also know many things our physicians never are even taught, especially about autoimmune diseases. My own pain doctor will admit, that I know more than many medical workers, including doctors, nurses, PA's, and NP's when it comes to my own conditions, because I do research things, I do decipher what is "not right" and what may be deemed something critical in my situation.

I would love to tell every doctor I have been to and others, that they NEED to be EDUCATED MORE on autoimmune and rare illnesses, because in many cases now, WHAT WAS RARE, is NOT that rare anymore.


"THAT IS MY STORY AND I AM STICKING TO IT!"


#HAWMC

#HAWMC@wegohealth


Sunday, March 27, 2016

Chronic Pain, the CDC, Doctors and the "view" that seems to be blurred by being much too "one-sided"....

 I still will always believe that the CDC and others are presenting this "abuse" and Overdose situation FAR MORE ridiculous as it really is. Those that are going to ABUSE these medications, are going to get them, whether through doctors or any other way they can... it is just the nature of the abuse situation, whether it be legal meds, or illegal drugs... I also know that I totally understand being "cautious" and doctors needing to educate patients, and keep a close eye on them, when they are on strong pain medications. Those patients and their families need to know and understand what to look for as far as an overdose, or what to look for when that patient is NOT getting ENOUGH medication... because not getting "enough" out of pain, is just as bad as overdosing... you remain NOT able to function if your pain level is too high. 

And "NO" NO type of pain treatment will ever remove ALL of the pain in chronic pain illnesses, BUT it will do what it is designed for if you use it properly and that is get the pain to a "tolerable" level, where you can function most of the time pretty well. When my pain level is so bad, that I am literally sitting in my floor crying and screaming and just wanting the pain to end, then for some reason something is wrong. Either my meds are not working correctly, I need a dose adjustment, or possibly I have a new illness or something such as a new ruptured disc in my neck or back, or new nerve pain etc... and if I go to the proper physician which I always do, they can either send me for treatment or surgery, and/or adjust my medications to once again get me to a place I can tolerate that pain. 

There is always SO MUCH BAD PUBLICITY when it comes to OVERDOSES, kids getting hold of medications, "quack doctors" who prescribe whatever just to make money, and so on... BUT HOW MANY TIMES DO YOU SEE THE NEWS STORIES ABOUT HOW GREAT A LIFE IS ONCE SOMEONE IS ON PROPER TREATMENTS FROM CHRONIC PAIN AND HOW MUCH BETTER THEY ARE ABLE TO COPE AND HAVE A SOMEWHAT NORMAL LIFE???? RARELY! Our society as a whole has become so ENGROSSED IN THE BAD STUFF IN THE NEWS, THAT the GOOD things are never printed, talked about, or put up for public awareness... thus the public has no idea HOW MANY PEOPLE ARE TRULY AND GENUINELY HELPED BY THEIR PAIN MEDS... That is the issue, WE WATCH ABOUT WAR, AND TERRORISM, AND MASS MURDERS, AND ALL OF TRUMPS CRAP, AND THRIVE ON BULL, DISGRACE, AND the MORBID THINGS in this world, 

YET NOT LOOK OR EVEN HEAR OF THE THINGS THAT ARE MAKING A TRUE DIFFERENCE... the truly dedicated professionals who DO GOOD, and are GREAT PAIN DOCTORS, AND they DO treat their patients in all ways to help them... and if that means opioid pain medications then they do those, but they also monitor that patient... I take urine tests, go into the office usually at least every 3 months, depending on when the pain pump needs to be refilled, and I "abide" by the guidelines that my doctors ALL give me... I also let ALL OF MY DOCTORS, know exactly what medications I take, who prescribes them and why, and make sure every physician is on the "same page".... and I know many patients that also follow those rules, yet of course there are those that do not... but those patients are not as "prominent" as the patients like myself that "do the correct thing" and make sure they lock their medications up, they keep their doses where the doctors tell them, they do NOT run out of medications early, they keep up the time and dosage of their meds, they research themselves how each medication can effect another... for instance I did not know why I was not really supposed to drink "Grapefruit juice" and I love it... and I still eat a half a grapefruit here and there, but that is different than drinking the juice... because that juice can either cause some medications to be "stronger" or "weaker" in the body, due to the chemical makeup of the medications along with the acid and other things you get in the juice....

I FEEL ALSO ALL PATIENTS NEED TO EDUCATE THEMSELVES about ALL MEDS, INCLUDING pain meds.... OUR DOCTORS ARE OVERWHELMED AND STRESSED ALSO, so even though they SHOULD MAKE SURE WE KNOW CERTAIN THINGS, at times something may slip through the crack, and they forget or don't know to tell you... and even with our pharmacists, they usually point out certain things, but even they are overworked and overloaded with getting scripts ready for thousands of patients.... and with the internet at almost everyone's tip of their fingers, WE, should take responsibility to look up information, do research and also ALWAYS TAKE A LIST OF QUESTIONS TO YOUR DOCTORS VISITS! I NEVER go TO THE DOCTOR WITHOUT A LIST, some either new symptoms, questions, and so forth... because without that "yellow" padded piece of paper, as soon as my physician walks in that door, I would forget half of what I intended to ask him... so we have to also TAKE RESPONSIBILITY for our own bodies, listen to them, and believe me, I WILL ARGUE WITH A DOCTOR, if I FEEL something is "not right"... and more often than not I AM RIGHT! So, even if they get upset with you STAY WITH YOUR GUT FEELINGS until you are satisfied with the answers your physicians give you... a prime example is my pain pump.....

I HAVE KNOWN IT IS NOT SET CORRECTLY... I have had too much pain that should not be there since the new pump was put in, and I knew I would have to be bumped up a couple of times, but when I went in this last time, whatever happened something is very wrong. I am NOT getting nearly the proper amount of medication as I was with the first pump, and I know by how I feel, and what my PTM tells me, and even what my doctor told me in the office, my medications are not at the proper level. So, I am having issues with pain, and other things due to that pump not set correctly. I go in on Tuesday, and I intend on getting it upped properly, AND FROM NOW ON A PRINTOUT, of ALL OF THE SETTINGS! They used to give me a printout, so I could know exactly how it was set, when, what doses, etc... but they got a bit lax in giving them to me, and I got lax in asking for them... well I will walk out with a printout this time, and from now on... because that printout had helped on at least 3 occasions to "get my pump correctly set".... so it is imperative I come home with that information from now on.... 

I am sorry for the LONG post, but this is such an important issue for me and so many others, we must stand arm in arm, side by side, and make sure we the PATIENTS get the PROPER treatments we need in order to have a better quality of life...A great example is that due to my pump not being set right, and I have not had the cervical neck surgery yet, I cannot set and type very long... and rec ently my Mom began to have all types of pain with her lumbar spine, and she has several problems there that at 82 years old, and her other health issues, they really do not want to even discuss surgery... it make only makes things worse... so she is now on pain medications... at first we had her on NSAIDS but her kidney functions went haywire so she can no longer take ANY type of NSAIDS... so my pain doctor put her on a small dose of a pain medication and she had injections a few months back... well the pain is so bad now, she won't even get out of bed until noon many days... and she now understands what I go through... yet she is not able to "push" through the pain yet, because her medication needs to be either adjusted or changed to something a bit stronger... so her quality of life is nothing right now and quite frankly I fear if we don't get it more under control, she will just give up and throw in the towel.... so something has to be done to make her feel better and have less pain.....

Saturday, December 26, 2015

Chronic Pain Medications, Narcotics, the CDC, Public Comments and More information I feel you need to read...

I have to say, that some of this is very true! I do know just from speaking with my pain specialist, that there are many programs all doctors can attend, that are free, and it gives them the knowledge to give patients with chronic pain issues, the proper diagnosis, and then the proper treatments, including medications if needed. 

But WE will NEVER see a CHANGE unless WE as a NATION, as a COMMUNITY, come together as ONE, and demand THINGS CHANGE! I've learned a great deal from my pain doctor about things such as Medicare Advantage Plans, Medicare itself, why many doctors have issues taking some of those policies, or even Medicare... it took my own pain doctor over 2 YEARS and then he had to go in front of a judge JUST TO GET PAIN FOR 2 SURGERIES! Doctors do NOT have time, and they cannot possibly run a practice if they have to wait YEARS to get paid for a procedure... My pain pump surgery alone will be somewhere around 30,000.00 or so... Just the pump in itself, is extremely expensive... 

so if I doctor does a few of those, and then has to wait YEARS to get paid??? They can't possibly stay in business like that. Plus I have heard some doctors admit, one reason they do not give out pain medications is because they feel they are not "trained" enough... our newer physicians ARE now being trained in chronic pain, Lupus, RA, autoimmune illnesses, and that is a good thing. ALL physicians should know about these diseases, and about chronic pain... So, I believe that the CDC has some to do with it, but then I feel "Congress" and the likes also have their fingers in it, along with our "insurance, Medicare" and so forth... and the fact that WE have to stop Hiding our heads in the sand, and STAND UP AND TELL OUR STORIES!!!! It is totally imperative that WE STAND TOGETHER and make our voices heard. 

We have some great organizations out there, the US Pain Foundation​, Power of Pain Foundation just to name two of them, but they also NEED US to HELP them get the word out... that is the ONLY way we as patients, caretakers, family and friends, will get the treatments we need, under the right circumstances, and not have our physicians "frightened" to prescribe the medications their patients need.... many of us cannot AFFORD a "specialist".... And even Finding a "good Pain Doctor" is NOT EASY! 

Can you imagine walking into a "Pain Management Doctor's Office" that ALSO IS A TEACHING UNIVERSITY, to find out THEY do NOT "prescribe" pain medications, but they send a 'RECOMMENDATION" TO THE patients PCP to give them the medications??? now how stupid is that!!! Talk about nuts! Then WHY call themselves a PAIN MANAGEMENT CLINIC???? This just happened last week to a friend of mine, and I know of a doctor here, that is a "pain doctor" but he got "reprimanded" so he can prescribe "some medications" but nothing that would be "narcotic" in nature... so you go in, thinking you will get the help you need... and then find out he can give out other medications, BUT he cannot prescribe any type of narcotic, even though he tells you that is what you need!


Don’t Blame CDC for Poor Pain Care — Pain News Network


 

 

 

Friday, October 2, 2015

#invisibleillness Blog Post - and talking about the "fight" of our Life!

"Invisible Illness"? A term to some that would or may not make any sense. Usually for the most part, if you have an "ailment",  surgery, are ill with bronchitis, even things such as diabetes, people tend to "see" outwardly some signs of "illness"... a cold, the flu, even something such as hypertension, high blood pressure, will bring some outward visions maybe the person's face tends to be red, or they may show signs of edema, swelling.

Obesity, is a disease. Of course that, or anorexia, those ailments are also able to be seen.

Someone who has a loss of use of their limbs, such as legs, arms, or have an injury severe enough to require a cane, or a walker or wheelchair... all that can be seen....


Yet, when you "see" a person with Rheumatoid Arthritis, Osteoarthritis, Lupus, Chronic IBS, Pernicious Anemia, MS - at some levels, Mysethiana Gravis, Sjogren's, or chronic types of nerve pain, migraines, and the list goes on and on of true illnesses, that are often not "witnessed" by the outside world. Chronic Pain, which can result in so many, many 100's of different ways, may not absolutely "show" to the outside world.

So, when you see a person parking in a handicapped zone, and they have a placard, even though they may "appear" to be "fit as a fiddle" - never assume that is so. Some days, I may not use mine, or feel like I don't need to. Other days, it is almost imperative for me to try to park as closely as possible, especially is a large store, such as Wally World, Beall's, Penney's and you know the rest. I maybe in so much pain, or feel so weak, or so fatigued, it is all I can do to go in, get exactly what I need, and get out. But, outwardly someone passing by, may not see that in me.

I am a recent new member of a church. Some people there know me, or have made it a point to get to know me, thus they can "get" some reasons why I may appear to look one way yet feel totally another.


I've found that even with my own physicians... if I "remotely" go in for a follow up visit, especially with the Lupus, RA and so on, I had better NOT "appear" all that "better"... in other words, you walk in and even though that physician may have been seeing you for years, if you come in dressed in a nice dress, or nice jeans and shirt, have makeup on, and your hair in place... and jewelry on, some see that as meaning you are "okay"... which can be as far from WRONG as possible!!!!

99% of the time I go to my doctors, whether the Rheumatologist, my pain doctor, my PCP, my heart doctor or whomever, I make sure I DO NOT appear like "nothing" is wrong. Now, that does not mean go in appearing as if you are on "death's threshold"unless for real you DO feel that badly, and believe me there are times I do look it and feel it... but if I am having issues that I feel I want them to really HEAR and LISTEN to me, then I dress more casual, usually forgo most of the makeup, and not come in joking with the staff, and laughing it up.... because no matter what "medical records" show,  that "appearance" is what can make all the difference in whether your true concerns, pain, illness, problems are truly addressed or are more brushed off due to the fact you appear to be doing fine....


In fact, I know that most of us say, "Hey, how are you"???? or we are asked that in any setting and especially in the doctors office. I've come to the place that I say, well not really as well as I want to be, and that is one of my main reasons for being here, something is wrong, I am in too much pain or this and that are swollen, or whatever all of the symptoms that have been going on, I make sure I totally explain that, and I do NOT any longer, give that "oh, I am doing okay".....

Plus with "invisible illness(es), they are often just that "invisible"... and I always go with a very long list, of symptom, especially new things, of my mental, emotional and physical shape.... If I have heard about a new medication, or something that sounds as if it could be right for my situation, that I put notes down and I go through each and every one of them explaining, what it is or is not, how long, when it happens, what type of pain it is, and as you can tell, I try to MAKE any specialists, doctors, radiologists... whomever is doing something on me that moment... I get all of the information possible, and I ALWAYS ASK for a copy of the "test", lab, dr. findings, surgery notes, and so forth... I get it all, and I keep it all... that way I have PROOF that this, that or the other happened or did not happen so I can keep up with it, and also take it to other physicians that may need to see me in the future...


The EXTREMELY REMORSEFUL thing about having a/AN INVISIBLE ILLNESS(S)... is that YOU FEEL ABSOLUTELY INVISIBLE YOURSELF!!!!

There are so many times in my life, whether it be at a doctor, having surgery, going through one thing of the other... is that I feel as if I am just a "ghost", another "body" for them to work on... and that the "person" that is there, very real, with every breath you take it is like they could care less what you are feeling, thinking, going through... it is all MONEY, POWER AND GREED!!!! I CANNOT SAY how many times I've repeated those words as of lately.... MONEY, POWER AND GREED!! Where is ANY Sanctity for the HUMAN BEING AND HUMAN LIFE ANYMORE????

Wednesday, April 29, 2015

"I Wish I would have known? - WEGO Health Writer's Challenge - April 29th, 2015 Wednesday

Today's "prompt" for the next to the LAST day of the 30 Day WEGO Health Writer's Challenge, is "What I wished I had known in the beginning of my patient journey?" In other words, when you were first diagnosed, what do you wished you could have known, asked about, done, been more capable of understanding and so forth.

One thing that comes to mind is I wished I had known more about different types of "Rheumatologists". Our physicians (and I say this often) have almost "specialized" themselves out of the everyday field of medicine.

Rather than have as we did not that many years ago, a doctor, or physician that could see you for a flu bug, take out your appendix, deliver your kids, and give your kids their immunizations. My kids are now 35 and 30 years old. Yet, they both were delivered by our regular physician, that did all of those things. Even if one of mine had been Cesarian, he could have delivered him or her.

A medical doctor was a doctor of "all". Unless you had something that was really extremely unusual, they did not send you to a specialist to "set a broken arm". If you needed stitches, they did not send you to a plastic surgeon. When babies were born, you didn't have to go to an OB/GYN. Even some surgeries, were performed by your regular physician, unless it was some "off the wall" type of surgery.

I began to notice, right after my youngest was born, that doctors began to "not" do everything. If one of mine had an ear problem, off to the ENT doctor we went. If you needed surgery, let's say "female surgery", a hysterectomy, you saw your OB/GYN.

Then when it came to cancer, you were sent to any number of "cancer" specialists. It began as kind of an "umbrella" physician, an Oncologist. Then you began to see that branch out into "breast cancer" specialists, brain cancer specialists, intestinal cancer specialists, and the list continues on.

If you had a joint that needed surgery. It maybe that your regular "Orthopedic surgeon" may not do a "hip surgery" or "elbow surgery". You had to take yet another step into the "Orthopedic Surgeon" who specialized in that particular joint.

Now, it is almost insane. When I hear or see just home many "specialists" there are depending on what is wrong, it can make your head spin.

So, had I known that a "Rheumatologist" that worked with RA or Lupus patients, maybe totally different than one that was more into other autoimmune illnesses, I may have seen the proper doctor a great deal more quickly than I did. My very first "Rheumy" as we call them, was very up in age. In fact, he still gave "gold injections" and this was about 2007. So, at the time, seeing him may have been the right thing to do. He "named" off after extensive lab studies, and also seeing me several times, a "few" different autoimmune illnesses that I have. He began with MCTD ) "Mixed Connective Tissue Disorder", Raynauds, Sjogren's, possibly Lupus, but he was not "set" on RA. As I said he was really up in age, but honestly he was one smart "cookie".

Yet, due to his not wanting to be as "aggressive" with the latest medications such as the biologics, I make the decision to find another Rheumatologist that would be. Well, little did I know, until after seeing 5 or 6 different ones, finding someone that would "treat all of them", in an aggressive manner was not easy. Each one either specialized in Lupus, RA, and so forth. Plus they were not much into the latest of medications.

So, had I truly known the factors surrounding getting into the proper Rheumatologist, I may have been able to "prevent" some of my problems that were getting worse, due to not being treated.

I also wished I would have began researching the medications, treatments, and doing my own blogging sooner. Even though I had done a great deal of research, when it came to the Sjogren's especially, I didn't do enough, soon enough I fear. Had I really known just how quickly Sjogren's was completely destroying my teeth, I would have searched for either a dental specialist on Sjogren's, or made sure my Rheumatologist did know about Sjogren's and was more apt to let me know just how bad it could get so quickly. By the time I knew just how bad my Sjogren's was, it had already rotted my teeth from the inside out. It was not until after the first two broke off at the gum line, and I went in to get a full mouth digital X-ray, that my teeth were goners. There was no more patching to do. There was basically nothing left to try and "save". So, wishing Sjogren's had been one of these that a really got adamant about, maybe, just maybe, I would still have some of my teeth. Now, my dentist told me, that even if I had known around 2007 more about it, since there are really no "medications" designed to fight it off, and the two I took really didn't do much. It was already too late. Thus, I spent all of 2014, getting the entire mouth of rotten ones all pulled, getting dentures, then going onto having "mini implants" for the bottom dentures, so they will stay in place.

I also wished years before I got an "official" diagnosis with the autoimmune illnesses, I had really pursued the reasons why, at well before the age of 40 years old, my joints were in need of surgery. I had 3 knee surgeries, an elbow surgery, a shoulder surgery, and many of my joints injected from about the age of 21 to 40! The answer I got for the most part when I did try and ask "why". was always met with, "Well we don't really know, But I feel you probably have "arthritis" that has surfaced early due to "genetics". Well, it was true, my Dad and Mom both had arthritic issues fairly early in life. Yet, nothing like mine where anything I did hurt.

So, more research, a better understanding of doctors, and asking more questions are things I do wished I would have done differently, more, better, etc. when I think back on when all of my health problems first began.




































Saturday, March 21, 2015

AS YOU Go to DC Next Week to Represent ALL with so many health issues, may WE ALL do our part to BREAKTHROUGH the disparities that hold back Cures...

Well the "day of infamy" is almost upon many of us! That is the packing, preparing, and getting on that flight to Washington DC for several activities going on there this coming week! I believe our Congress will be a bit on overwhelm at times with all of the health activists, Ambassadors, Volunteers, and many that will be telling their own personal story about their chronic illnesses, the different disparities and challenges they face, some daily, and how much more we need in research, in new technology, new medications, more specialized physicians, of course which all take lots of dollars to be able to fund some of these extremely needed actions. Life is already a huge enough daily challenge, to work, take care of family, kids, go to college, and participate in the "daily" life of living. Then you add on top of that, chronic illnesses, chronic pain, being unable to get the doctors and medications you need, further more possibly not being able to even get a "real and proper" diagnosis FIRST so you can receive the treatment you need. The amount of "challenges" that those of us with chronic illnesses face, especially when the diseases are often arthritis, autoimmune, or both, and we still have so many UNANSWERED questions about these illnesses. Are they genetic in nature? Is there something on Earth, in our water, food, land, air, that is causing so many more of us to become ill with these chronic diseases? It is almost unbelievable to actually think about the growing numbers of those (and especially once again women) at an alarming rate being diagnosed with autoimmune, autoimmune arthritic, arthritis, FM, CFS. MS. Myasthenia Gravis, and then the other "ailments" that follow along with these "main illnesses"... brain issues, heart problems, lung problems, bones, joints, spinal issues, and then with Sjogren's the "dental" problems that are so very severe so quickly, that within months, like myself you find you are losing every tooth to this horrid disease, and there is not a thing to do about it, but have dentures. You cannot stop it or even slow it down. I tried. I was meticulous with my dental health, always had been. but, even as meticulous as I was, also using the couple of medications available, along with keeping my mouth moist, chewing sugar free gum, you name it I tried it, yet I still lost ALL of my teeth in less than a year to Sjogren's. So, each and every person, whether you get to go to DC this week and tell your story, or you are sitting at home, possibly too ill to attend, and you do your "advocacy" work from your computer, you send emails, you send snail mails, tell your own elected officials, and not just "federal" but our STATE Officials, and even Local governmental officials need to be a part of this growing, ever enlarging issue of autoimmune illnesses, and rare diseases. All also goes along, with people getting the help they need, so they can afford their medications, they can afford and be seen by the proper physicians, they can afford the surgeries, or whatever their treatment needs to be, even like myself, trying to PAY out of MY POCKET over $15,000.00!!!!! cash for my dentures to be put in properly... there are not many people around with that kind of available money to spend in one whack at a dentist! THIS NEEDS to be PAID FOR MY HEALTH INSURANCE! IT is A HEALTH PROBLEM, NOT DENTAL THAT CAUSED ME TO LOSE EVERY TOOTH!!! But, we ALL need to stand up and say NONE of this is RIGHT, NONE of this is ACCEPTABLE, WE should have the medical, dental, eye and more CARE of PROFESSIONALS and experts that can help us live somewhat of a normal life. The ALMOST INTRACTABLE PAIN I've been in over the past week, SHOULD NOT BE!!! I SHOULD not have to wait, I should have been able to have my medication UPPED the next day, not a week later! I HURT! I HURT to the point, that it's stopping me from doing what I love the best, my advocacy, my writing, my helping others.... my taking care of my own home, shopping. and helping Jim and my Mom... ALL of this is just WRONG! AND ONLY YOU AND I can MAKE IT RIGHT! So, for ALL of you whether you will be in DC next and able to "stand on the steps of the White House" as I used to say, and plead my own case and the case of others that could not attend, or if you are home, and not able to attend you still MATTER! YOUR VOICE will STILL BE HEARD! We must RING OUT, CRY OUT, and say ENOUGH IS TOTALLY ENOUGH! WE are one of the MOST INTELLIGENT NATIONS in the entire WORLD! There is NO REASON that our incredibly talented researchers, doctors, professionals in these fields can't find solutions, but they need funds to get these types of things running and off the ground. Again, I wish ALL next week an incredible and memorable trip to DC. May your voice RING true for all of us... from patients, physicians, family, friends caretakers... researchers... may we FINALLY BREAK THROUGH the "thick headed" thinking of some, and get brilliant things accomplished! As tears roll down my face, I beg of all of you to stand up and tell your story... to stand up and tell a story of a friend, family member.... stand up and be heard!

Tuesday, March 17, 2015

FIX Medicare NOW!!!!

PLEASE Take a moment and go to this site!!! You can "automatically" send several of the "key" team of Congress that are the ones that really can get a handle on the issues with Medicare!!


http://fixmedicarenow.org/patients/


., March 31st is almost here! Please help us

 






 , March 31st is almost here! Please help us  

 

 

Tuesday, February 10, 2015

Always Looking for the Sunny Days even though the Cloudiness and Fog hang Around... dealing with symptoms...

Okay, well I've missed out a couple of days dammit with this stomach mess. Not sure what is gong on. But, I do KNOW I am SICK of it! I am a bit better today so far. I've tried to not drink or eat anything I think might be causing it so badly. The vertigo just has to run its course usually then gets better. What I am concerned about, is why this time it is so bad, and why the meds I take for it are not calming it down as usual. I am still doing some research myself and I am sure since I am honestly WAY OVER DUE for A scope to check out my esophagus and stomach, that will probably be where I am headed. I know I have Barrett's Esophagus. I really should have had it scoped again over a year or more ago. But, with everything else, I keep having to postpone it. Now with all of the problems I have, I am concerned if the dysplasia, where my actual stomach lining grows out of the stomach and into the bottom part of the esophagus, and can cause cancer. But, I just dread any other "surgeries" etc> I am so literally sick of doctors, medications, insurance, pharmacies, no one can get their crap together. I've had an ulcer before thus one of the reasons I am on Nexium, plus of course GERD. but even the Meclazine I take for nausea and the motion vertigo. It just seems what ever is going on, still to me is totally separate from the Lupus, Sjogrens and RA. One good piece of news! MY ORENCIA FINALLY CAME IN today! After being off of it for at least three weeks, I feel may have some to do with how I've felt this past couple of weeks. When you begin to research Lupus, Sjogren's, RA, FM, ME CFS. and any and all of the other AI illnesses from MS to Diabetes 1, there can be a million symptoms, all of them similar, and they may or may not have to do with the autoimmune illnesses. Of course the problem I can already tell from that is patients (meaning us) and our doctors, whether PCP, Rheumatologists, or other specialists, tend to get "lackadaisy" and "automatically" no pun intended blame it on Lupus, RA, and so forth. So, each time a new "symptom" arises, all too often I feel it is kind of "'blown off" as to whether there is something "new" causing the new symptoms, or is it indeed the AI's. I realize that is is very difficult, and in some cases probably almost impossible to defer one from the other. Even with many types of tests, lab work, studies, and so on, still there may not be an "answer" other than due to one of the AI. That is scary though. What if, and I am just "saying" what if myself, or anyone with stomach issues and the nausea, vertigo and so forth left it unchecked, and went on either with the doctor knowing or just figuring on our own, it was "just the AI" and more symptoms, and it was something worse? What if it were stomach cancer, or some type of other cancer such as leukemia, or the GERD had really done a number on my esophagus and that dysplasia is much worse than it was. Or what if it is yet another autoimmune illness, or any number of other chronic diseases that can start out with the exact same types of symptoms. So, even though none of us want to jump the gun per se', running off to our doctors each time one little thing pops up or changes, plus we are all in the place that, oh well, they will blame it on the Lupus anyway, yet something else that may need other treatment, surgery etc done. A great for instance was my double hernia's early last year. I was told by three different doctors those "lumps" were nothing to be concerned about, and they more than likely were not hernia's. Then I still feel uneasy, so I go to a surgeon, who sure enough says right off it is not just one hernia, but I had two... one on each side...So, had I listened to those first 2 or 3 medical doctors who just seemed to not want to really find out for sure, they blew me off. Then I do find out I have hernia's just as I had suspected all along. We for the most part, have a "gut" feeling, again no pun intended, about our bodies. For those of us with chronic illnesses, we especially tend to watch out like a hawk for any type of new symptom, or something that seems to be "off" and not quite right. Yet, often times I know for myself, I go into the physician's office, and I just feel like if I am going to get the same old answer, it is the "Lupus", "RA" etc... then why... and if it isn't or they feel it may not be, then here goes the 50 "shades of Testing" that runs up expenses, and takes away our precious time. Even with many new tests, there still may not be any "one" answer, if one at all. I have found that even with the double vision, that started so suddenly out of no where, and has gotten to where I have it all the time, unless I wear my corrective glasses with the prisms in them, I have constant double vision. Some of you may recall the entire ordeal I went through for at least 6 to 9 months or more. I saw 2 or 3 different eye specialists, a couple of different neurologists, my Rheumy, my PCP, and in between I am sure probably someone else. I also went through exam after exam, test after test, loads of blood work and even a "biopsy" on my temporal artery. The specialist felt I had temporal arteritis, and it did make sense. But, the very treatment for it was something I was already taking, just not in as high of a dose as they use on that illness. So, I also found out the biopsy comes back all too often "inconclusive" thus I may have had it, but they didn't really get the exact YES, but it was not "negative" either. It took months and months, a couple of different pair of glasses, and just all kinds of neurological testing. One of the Neurologists said he felt I had Myasthenia Gravis which is another autoimmune disorder, and that will cause the symptoms I had and also explain where and why they were showing up at that time. Yet, still there is no one exact science about Myasthenia Gravis either. Just like MS, which I could have also, still there is one test that they can do, and again it is not always "exact"... It might be negative, and I still have MS, or I may show up positive, and be negative in reality. So, as we hold hands, together one next to the other, remember for one, you are never alone... there is someone out here, that can empathize with you, and totally understands because they are also experiencing some of the same things, whether it be illnesses, or any other number of other explanations. You can bet money on that there are one or usually many more of us with the same situation. Gosh, I can count on my hands, toes, 50 times over at the number of people who have been down almost the same road as I and the rest of us have. I've managed to feel "well enough" today to get some cleaning done, baked a lemon pound cake, did some other cleaning here there and yonder, vacuumed, and even colored my hair (of which I am not thrilled, it is way much darker than the last time I did it with the red).... but I also know it will fade out pretty quickly, and then won't be so very deep red... the color I used before came from Avon, and they quit making the product line! Plus I didn't keep the number or part of the box so I could try and match it up and I picked what I thought would be close, but it is still much deeper reddish/almost maroon than I expected.... so I hope maybe, my stomach is settling down, along with the stupid headache. I need to run errands and get to the market tomorrow, so I need all of the "wellness" I can get hold of for tomorrow. It will be one of those busy days. Anytime I head to the market and have a "list"... a long list, and then coupons, that means a longer trip that runs into hours if I have lots to stock up on and to use coupons on....

Sunday, November 2, 2014

Medicare Advantage Plans, Medicare, Supplements, & Health Insurance

I realize many of us are probably on disability of some kind. Those of us that have been chronically ill, for way too many years, have finally had to "give up" some awesome jobs, to get only a "fraction" of the benefits and salaries we once had.

Yet, chronic illness, whether autoimmune, CFS, FM or many other diseases, syndromes and illnesses, brought many of us to the place of decision... to give up a job and go on disability.

Well, in some states and TX is ONE of them, if you are UNDER the age of 62 I believe it is, and you have Medicare, they would not allow you to just purchase a "Medicare" Supplement. You HAVE TO get a Medicare Advantage Plan. Of which, there are not be a very few of these types of plans. With the "hatching" of Obama's health care plans, most of which Congress, as I understand it, you WILL BE able to purchase a "Medicare Supplement" if you so choose. The point of that is though, they are MORE EXPENSIVE than getting into a Medicare Advantage Plan. Some of the Advantage Plans do not even charge ANY Premiums. But, there are some doctors who may not take them, or you may have to get some PA's (Pre-authorizations) by your physician on certain items, or possibly you may have a medication, that may require "step therapy", where you try certain meds first before you go to one the doctor recommends for you. Although all of that is going on, I do know several bills have already went through Congress to change those issues.

Well, I've had Humana - their Medicare Advantage Plan now for about 5 years and for the first several years I was quite satisfied. Them seemed to have been over the past 3 years getting slower and slower to process claims, making doctors wait to get paid, which of course is going over about like a lead balloon. So, like my own PCP, who had now decided as of Jan 2015 to STOP taking my Humana Plan! Well, this is the doctor WHO FIRST DIAGNOSED MY LUPUS! Plus he is the one who takes care of my Lupus, taking care of my flares, and medications. Even though we have been with him from almost Day 1 he was my physician, and I am trying to get him "Grandfather" me in due to the Lupus situation. Which I know can be done, especially due to the Lupus, because they did it with another physician for me on my pain doctor, who takes care of my pump.

But, when I started checking around, I've found out that I maybe doing a smart thing by changing over to the AARP "Sponsored" United Heathcare Medicare Advantage Plan. AFter researching it over about 3 hours yesterday,  I began to see more benefits ALL of my doctors take the Plan, all of my medications are in their database, and say that they take them... it does not cost the 49.00 a month, plus they give you some basic dental and eye coverage and for something like 30.00 or a little more you can get premium dental coverage.... anyway, if any of you have the plan, I would love to hear from you.

I shall post more tomorrow... I am worn out for some odd reason...

So, I think I may join my two pups and my husband on the sofa to watch the rest of the ballgame that is on

(A bit more from Facebook)

Well, if any of your have a Medicare Advantage Plan, and want to share how you feel, please I would love to know. I right now have Humana Gold Choice, and I have found out that MORE of my doctors and my medications will be covered under "United Healthcare Medicare Advantage Plan" for 2015. I spent a couple of hours yesterday checking all of my doctors and my medications through the site, and doctors that are going to "DROP" the Humana MAP in 2015 ARE going to continue with United Healthcare HMO Medicare Advantage Plan... I used to be extremely concerned about "HMO's" when they first appeared on the Horizon. They have a very bad rap to the entire insurance industry as far as health wise. But, now with the Medicare Advantage Plans more doctors in my area and my own personal doctors are covered... where they as I said as dropping Humana. Even the specialist that did my neck and reverse shoulder replacement take the United Healthcare plan, and he had dropped Humana over a year ago, and if I needed to see him I would have had to pay something like 30% or maybe even 40% of the visit charges!!!! So, if any of you have an opinion... likes, dislikes and so forth PLEASE either share here, or message me if you wish, or even email me at redstangblonde@yahoo.com or rhia@ravishingrhia.com.... I am thinking about changing both myself and my Mom over to this other one. AND to BOOT Nationwide UPPED my insurance and I just got through getting a new quote, which is over 500.00!!!!! a YEAR cheaper that who I have now... I am so pissed.. they PROMISED ME when I had to get the new car, my monthly premium would only be about 15-20 a month higher... BULL they almost DOUBLED their premium!!! I also found out that since Jim is NOT able to drive at all, and may not be able to for a long, long time if ever. So I DO NOT have to keep him on my policy for now, until he can drive again. Talk about a bunch of money hungry greedy asses... pardon my French! You have to watch your back, front and sides, because they will "stab" you any way they can.... corporate GREED!!!!





Sunday, July 20, 2014

The Essense Of A Nation In Desperate Need of Quality "Non-Greedy" Medical Staff... where have they gone?

As I title this, I know it shall keep the "title" I have here now. This is a very true tale, about a recent occurrence that I've witnessed in a small town close to my very own. Population, probably a great deal smaller than the 20,000 so give or take from Ennis. By driving down "main street" of this tiny town you would assume just about everything has shut down, due to the larger towns around Ennis, Waxahachie, Lancaster, DeSoto, and even Dallas for that matter, so of the 2 entire blocks that make up down town, I would venture to say 80 percent of the window fronts are empty, and the stores have been shut down for a long while. All of this from giving into the larger communities such as Ennis, with its large Wally-World, or Waxahachie with Lowe's, Home Depot and all types of "large" stores that took over our "Mom and Pop" neighborhood stores many decades ago. When we pulled in for the first time about a week or so ago, my first view into a "farming" community in a long while.

I had been in this community just outside of Ennis many times in my younger years. And as usual not much had changed. The dentist I took my kids to see there were closed.

But, when we walked into this place that was supposed to be a "medical clinic" I was not sure whether to run to the car and leave, to ask if this "was the clinic", to laugh, or to just sit down and cry. The upholstery on the chairs must have never been cleaned or vacuumed. The entire place was "junked" up with bric-a-brac, and even though there were plenty of chairs, today the place was more than packed and standing room early. Most of those there you could tell were either living from day to day, and of course this clinic is specifically for those that are without insurance & are not able to afford a lot as far as a medical visit. They also do a great deal of "referrals" to other doctors. So, like Jim, he needs to have several "specialists" that as time goes by, he may need medications refilled, or something to be checked out.... after this huge of an accident, the idea of just anything could go wrong and he needs to have a list of "specialists" that would take the "Superior" Medicare Policy... some type of "state" assistance meant for someone more like himself... an accident,no insurance, also even though we have a lawyer it could be a very long time before we see the finances to be able to "pay" for the medical bills. We have hope their will be something to cover later in life, but at the time we have no clue at all as to what if anything will be given, not given, etc... out favor, not in our favor... we just don't have clue... and until the day the lawyer, or someone hands us a legitimate "check" I don't even want to try and dwell on what that might be.
For now, we can squeeze through month by month, and get everything paid for... and that is what counts for now,

Back to the Subject... this woman in behind the "receptionists glass and wall, was just going on and on about this "person" who had passed away.... talking on and on about the relatives, the funeral.... for at least 25 minutes... at the very minimum... and there was not another patient to be seen. Finally, this "voice" calls Jim back. OMG, I almost fainted. Here is this very feeble, very elderly woman, and she was then and again yesterday - and had no clue what she saw him for the week before, what medications she was "supposed" to have given him... claimed she "NEVER" calls medications in, yet as she began to write our scripts, she is on the phone with our PHARMACY giving them the scripts. All in All when we got through.... we were THROUGH! This woman... and I am sure year ago may have been a great doctor, BUT SHE NEEDS TO BE TAKEN OUT OF THE MEDICAL WORLD!! The lady either has dementia, or the beginnings of Alzheimer's.... and another thing.. she never listened to anything we said to her, and she could NOT sit still. She was up and down, out in the hallway, talking to one person, then another, then would come back in and ask us what medication did we talk about... and at the very last, which took the "cake" as the saying goes... as she began to "name off" specialists Jim needed to see... a GI doctor, yes, A Neurologist, yes, a Cardiologist, yes BUT really only to keep an eye on his blood pressure due to the Spinal Cord Injury and a PCP is able to do that, and then all of a sudden, after WE said a Pain Doctor, she leans over and says to Jim "Also you need to see a "pee-pee doctor" ROFLMFAO!!!! What the hell??? Where are we in a Pre-K class room or what??? What about a urologist, and HE DOES NOT EVEN NEED ONE! There is no issues to even need a "pee-pee" doctor, HAHAHAHAHA!!!! By that time I did not know whether to slap her, or just feel sorry for her... or BOTH! Who I DID FEEL SORRY FOR were the 20 patients sitting h=in the waiting room to see her... Unless they needed a -pee-pee doctor they were sh*& out of luck....

Wednesday, June 25, 2014

Border for Illness? Researchers for Chronic Illnesses, Autoimmune Diseases Connected in many Ways?, Lupus, RA, Sjogren's - How Many are you diagnosed with?

I post this morning getting off the "days gone by" and back to the medical world at at hand. This particular post came on one of my Med Page Today's News letter I get daily. It caught my eye for several reasons. First of all, this particular "illness" can be caused by being in water that carries it, dogs can carry it, rodents, which means larger cities with people that live on the streets could be more prone to it etc. But, in everyday life we, meaning any of us could come in contact with it. I young boy came in contact with it after being in another country, and he got ill after returning home. He was in and out of the hospital with what seemed to be aches and pains, stomach upset, and almost like flu symptoms. But, after researching his travels of latest they were able to put together the child had contracted  (leptospirosis) http://www.medpagetoday.com/Neurology/GeneralNeurology/46185...

Some of these types of illnesses are difficult to detect if they right questions are not asked, and now I have noticed more and more doctors asking me if I had been on a plane lately, traveled to another region overseas, been anywhere out of my normal home life anywhere, where you can pick up some of these illnesses. Not that they are not only there, just like this one, dogs can have and carry it, but it is more likely to be a more aggressive strain that your body may not be able to fight off unless you tell your physician right away following a trip to somewhere you have been, then suddenly you come down with symptoms of illness. Even around our world today, it seems Polio, which I can barely believe is back on the playing field of illnesses, and with a rampant rage from what I have read. I honestly thought polio was another one of those illnesses like "small pox" that had been eradicated from the world. Yet here were are with Polio showing up and in a good number since at one time we had cases almost down to nothing.

I've never had the pleasure of going anywhere out of the United States for any type of trip. So, I do know about all of the "standard" inoculations you must take in order to go to certain countries and so forth. These are due to coming in contact with some illnesses that may not be here, but they still exist in other parts of the world. Which leads me to the question... we are growing daily in to a "smaller world"... before you can type this out everyone all over the globe can be reading this in just about any country, any nation, any household, within the "hit" of enter on the key board. Thus it is no wonder why so many of these diseases we once considered gone from out nation and possibly world for good, are alive and thriving in the country you are flying to, or even the person you are sitting by could be carrying that illness that might be able to get on board your track or any numbers of illnesses such as these, that we don't often think even exist in in the USA, but could lurk in the very person sitting next to you. As highly intelligent as we are here in the USA, along with the brilliant researchers in the UK, China, some places such as India, we have the smartest doctors, researchers, fellow medical personnel that have ever been. But, our "diseases" seem to be getting a bit smarter also. Autoimmune Illnesses such as RA, Lupus, Sjogrens, MS, Still's disease, Diabetes 2, Myasthernia Gravis, Pernicious Anemia, .... others osteoporosis, FM, CFS/ME.. just a very few of the hundreds and hundreds of chronic illnesses people in our nation as well as all over the world live with, we are as in much deserving of the best treatments, the latest researchers, medications, testing, and all that has been found out by those that use their entire lives dedicated to finding a "reason" for these, finding a way to put them into "remission", medications to help with all of the side effects and other growing number of illnesses that "stem off" from Lupus, and such. More and more we find out due to this "pattern" of the World Wide Web, that at our fingertips, we can "see" how many other have all of a sudden come down with similar side "illnesses" - more like a Secondary to the first one, and often with very similar symptoms. RA and Lupus seem to run hand in hand... along with those I see that Sjogren's, Raynaud's, Vasculitis of sorts, Shingles, Heart Problems, Kidney problems, Liver issues... all almost seem to run neck and neck with what your were initially diagnosed with. It is overwhelming when you begin to research your own "symptoms" and diagnosis, that physicians give you. There is such an evolving realm of the latest and the greatest, of cures, of things to "explain" how Lupus or RA maybe genetic, or how CFS may come from this viral syndrome, or your teeth are falling out simply because with Sjogren's, they literally "rot" from the inside out, not like regular dental caries do. When you went to the dentist as a child, if you went, yo may have had the dentist find a small "cavity" a spot that was starting to become soft and weak, more or less "rotten" as I would call it, but it was "seen" from the outside of the tooth, then usually confirmed by one of the old fashioned cardboard mouth cutting X-rays they put in your mouth, aimed the machine at it, and then had to wait to see how it would look. Of course now it is as simple as holding a small "stick" in your hand, they put a small "digital" X-ray machine up there and they can snap away and get as many as they need. My latest adventure was the "panoramic" one. When that machine began to go all the way around my head, encircling it... and then immediately, I SAW every ROTTEN tooth in my mouth  almost fainted. The difference, these teeth "never" showed signs of issues. I never had a spot that hurt or turned dark, I never felt I needed to go to the dentist honestly, and after not having dental insurance for a long time as long as I brushed, flossed and took care of the, I thought I was "safe" as far as my teeth went. Then wholly cow a year ago, I huge piece of a back tooth broke off while I was eating something, and it was something soft.. Well before I could even get to the dentist another one did the same. I was wondering where all of a sudden this was coming from. I did know that "Sjogren's" could cause dry mouth, dry eyes, and was a pain when it came to those things. But not one of my doctors including ANY of the Rheumatologists, EVER informed me about the very "HORRIBLE" issues of Sjogren's...  Now here I am at 54 years old, of course IF I felt like fighting my health insurance com[any, I may get 60 percent of the $8,000.00! bill paid! But, while I am bickering with them, I am losing more teeth, which means more bone loss daily, which means a possibility of the implants or not wanting to fuse into the jaw bone properly... and you know where I am going..
So, who has "estimates" of $15,000.00 %$23,000.00 or even $8,000.00 lying around to give their dentist? I venture to say NOT MANY! Don't get me wrong, many of us probably have the "credit line" on a card or two in order to come up with $8,000.00. But, I mean "clear no interest cash payment", so when you walk out with all of your new and beautiful teeth, you do not owe on them until your are 95 years old!
I had and have choices to make. I could have "tried" to fight like hell against "Humana" and gotten a possible 60% (by the way even IF THE DOCTOR IS ON their PLAN) they still ONLY PAY 60% and not a penny more, even though this is caused from a medical problem. So, I would have still owed 40% of a bill that in Dallas at any of the larger Oral/Max Surgeons, would have been three times what the other 3 "estimates" were. So, I would have been well away, further from my dentist if I happen to come down with an infection or dry socket in the middle of the night or needed something on the weekend. You can BET there is NO WAY any of those in Dallas would come in, open up after hours... but they would tell you to either call this or that number, OR go to ER! Like the ER is going to do a damned thing about a tooth infection or a dry socket. Where, here my dentist is about 2 minutes away, 5 or 6 "small" city blocks and I bet if a dry socket or infection appears at night, after hours or on a weekend etc... HE DOES open the door to come in and fix it! Then I faced the fact that NOT one soul I know could drive me back and forth to Dallas right now. If I had any type of anesthesia (and believe me this time on Friday, I am asking him to "turn up" the gas) ... they were having heck getting the nose piece to stay where it neded it to be and I was not getting any of the medication I don't think... it never felt any different and I was not more relaxed as I usually am if they used the "laughing gas"... so Friday when he pulls SIX TEETH, I will make very sure I am "feeling some effects" from the has first. In fact I am looking that puppy up today to see how they determine how much and if you can ask them to "turn it up".... ;)




So, right about now you are asking yourself, what subject is this woman on today? illnesses" that come from other country's?, the many different realms of how autoimmune illnesses can turn from having one to several, how we need more informed physicians on these illnesses that will TELL US that SJOGREN"S is ROTTING YOUR TEETH PROBABLY, but we need to look with an X-ray because they are not "regular cavities" ???? or... How OUR world gets smaller, our diseases worse and spreading violently, how the USA does not care about "our healthy" BUT the CONGRESS SURE gives a darned about how much "medications, research, and pharmaceutical companies line their pockets?... Well, if you said ALL OF THEM! YOU get the prize... to me in one way or the other ALL is connected... we have illnesses that don't really "come" from here... but certainly"get here" rapidly from planes and ships, or not just people but animals, foods, anything shipped here from another country could have the capacity to make us "ill".. with one thing or the other... and every time I was an apple, or melon or a watermelon, banana, peach... you name it, I fear I am bruising it due to how hardly I am scrubbing.. like a child with dirt behind their ears ... trying to get every little germ off before I dry it off.
It is to the point we are inundated with worries about "germs", Illnesses, diseases, and all of the viral abundance of things out there that can make you a tad ill to those that can put you into the ICU for weeks on machines to keep your heart beating and your lungs breathing.

I am NOT downing the place our medical world is taking and has taken us. But, at times we have become so extremely concerned about the aspects of illness, we have a difficult time trying to enjoy those days we are NOT ILL! Now I know, like myself, any and everyone with a chronic illness, from Autoimmune Illnesses, to CFS, to like Jim as I am learning a (SCI) Spinal Cord Injury, & those that have lost limbs, had to have multiple joint surgeries, this list could go on forever about the about of those of us with some type of "chronic pain and/or issue, either in our own life, or in the life someone you are close to.
I've tried to figure out in my own "tiny small half fogged out brain of mine" why is it we seem to HAVE MORE illnesses... when I was a child I did not know nor hear about ALL of these illnesses, those with chronic pain and suffering, and those that had been harmed in an accident or came down with some "foreign" virus. IF there are more now, why? Well, if my own "stupidity" of a self would think again, as I have said before and will repeat myself again I am most sure ... we have MORE PEOPLE, WE ARE over covered in NEWS happening right then... we are stnading under the helicopters when they are searching for a thief. Or we have someone like Richard Engel that sometimes I wonder about) who seems to love to "dig down in the trenches" literally with those guys and girls over their protecting us... so first hand we see the bombs, the shooting, the massive about of bodies being dragged in a pile to be basically push into a deep pit and covered over. Because there are SO ANY BODIES, THERE is no way they could bury them all. Thus they will later probably build some time of "shrine" on that plot of land so they can "remember" those innocent men, women, and children that died needlessly over a "holy" war! This stupidity over in the Middle East is jut that stupidity. It has nothing to do with the "GOVERNMENT" or politics. Oh they may try and tell us that, but it is a war to help the people and to get back to "democracy" but  it truly is a "HOLD ABOUT GREED, CORRUPTION, & POWER... it is about "one's them "God's beliefs " over how they feel about"
It is NOT that MORE of these types of things are happening. Look back and you can see we got these pieces of information, NOT on an "I-Phone" or Smart Phone. We did not open our I-Pad, Laptop, or run to your desk top to check out what was going on . Thus the "news" was happening all along, we just did not know about it until we heard it on the news channel or happened to see it in our local paper or the Dallas Morning News. If bad weather was coming, of course we were informed as quickly as possible on our local news channels, but sometimes by radio, rather than on the television.
It has not been that many years ago, when "kids" were kids. We rode our bikes, went to school, learning math, reading, and thinking about our next Summer Vacation. Now there are kids that were my age in the 5th, 6th and 7th grades that are bringing loaded guns to school and killing  my fellow class mates. I can't even imagine where I would get an idea like that. I grew up in the 70's listening to the Eagles, Stones, Procol Harum, Fleetwood Mac, naming them from Elvis to Porter Wagoner, and NONE of that music made me want to "harm" myself or my parents, or anyone for that matter. But the point of the matter is, we DID have probably many terrible things going on. We were in wars, like Vietam, and the Korean War, & have since then had to FIGHT to keep our Nation a free nation.

I am not saying that it is a bad thing, but kids now days know MORE about guns, war, fighting, drugs, sex, & just about any other crude, distasteful subject you could dream up to talk to them about, and bet is, many of them would be able to tell you something about every category. IF you asked them where they heard about a particular type of weapon, or some type of drugs out on the street, if they want to, I am quite sure they would say one of the other students, or students parents, or teachers (kids of course sometimes overhear teachers and our) conversations.

There are things to this day, that I would be clueless to talk about when it came to certain subjects, and I know my almost 30 yr old and 35  (I think almost 36) year old could come right out and tell me that had known that for years and years!

Eve though our "time lines" in many ways are somewhat the same.... many of us in our late 40's early 50's like clothes, music, movies, concerts etc just like my 30 and 35 year old does. Then there were MANY differences in how I raised them to think versus how my Dad, wanted my Mom to "teach" me. SHELTERED! Keep the women of the house "dumb" or not as intelligent thus men keep control, and things stay "in harmony".... Sorry Dad, but that was total bull crap!

Not me, I tried my best to teach them what was RIGHT and what was WRONG!, how to treat others, and to get the best education (at that time) that you can or find something in a job you "love", and then hold onto that job. If it is not really quite the right one, that one will appear someday if you are patient. Well guess what... most of the things I taught them "stuck" BUT "patience" is NOT one of them... if they WANT it they want it NOW!!! No saving up, no waiting until we have the money, not giving thought to other things that could effect the bottom line, and yes to this day, I hear it from my daughter quite frequently that they are "talking about" saving up for the house they finally want to build.... BUT the next week they will have a new vehicle or another travel trailer when the huge hail storm beat it to pieces down by the Frio River this last before before when they had the BASEBALL sized hail!!!

Okay, after taking the VERY LONG ROUTE to get to my point, is exactly what my point is. As "technologically intelligent" as we are, the things we NEED to accomplish are mind boggling and astronomical. I know with the highly educated, and some of the best genius' that have ever been on this planet, someday, someday, they SHALL bring US the LIGHT! It will "turn onto" a whole new way of treating illnesses for all. It will be something that will totally change Medical Science and send the "older doctors" packing because it shall be that advanced. I honestly have no doubts in that. OF course it is NOT going to happen "overnight", in a decade. or whatever kind of "number" you want to calculate it to.

The ONE THING that SHALL REMAIN CONSTANT throughout ALL OF THIS NEW ADVANCEMENT and what shall NEVER change... and that is "US". WE the volunteers, the advocacy people, the Ambassadors, the Activists... our VOICES MUST remain the one CONSTANT now, and forever until eternity. We are an integral part of what MAKES Laws come from being a "thought" to ACTION! We are the voices that ring out on Capitol Hill with groups such as Arthritis Foundation, IFAA, WEGO, The Lupus Foundation... and SO MANY MORE there are too many to truly name... and within the "cyber walls" that bind us ideas ""give birth".... and they teeter and totter just like a toddler as well make way for bigger and better place to go. And as we Watch that "one small idea" become living and helping out those who need it so desperately... we can thank one another and our own selves for the tireless, no pay, volunteer, hours for making that become what it is today.

So, as I cover many things in this post... I hope you pick up something that gives you a 'light" tonight to take with you... and make your own idea "be born".....


Here is the link what began my "brain" power and thoughts or what is left of my brain... what is left and that is not of too blogged to write the above...

http://www.medpagetoday.com/Neurology/GeneralNeurology/46185