#Hashtag, Lupus, Blogging, Life, and the Life of everyone who deals with Autoimmune Illnesses - patients, caretakers, family and friends...

My dentist said it was NOT an invasive as a bone graft, and once that is done, then around the middle of November I go back for another set of X-rays to see how well the jaw bones are filling in and healing where the teeth once were. I pray they will be ready for the mini implanted pins and I will get over all of this dental mess once and for all. It has just been not only a pain in the mouth, the wallet and has been a massive pain in the butt. Anyone that ever has to go through the entire process of having all of what is left of your teeth pulled, to then go directly to dentures, and them NOT hold as well as they should... YET, you must wait patiently or for some impatiently... for the bones to "fill in" where the teeth were before you can have the "mini implanted" little bars to hold them secure... I HONESTLY FEEL YOUR PAIN AND SHARE YOUR NIGHTMARE!!! It was not really having the teeth that were left pulled 5 at a time... the "laughing gas" helped to get through that. Besides I am not afraid of needles, even though they are never pleasant in especially the roof of your mouth anywhere... or even the pulling of the teeth in itself. Other than mine being tough as hell to get out (you would think the Sjogren's would have had them degenerated enough that they would come out easier. That is not the case. Mine had a tendency to break, split, fly over the room, and give the dentist a run for his money, as my Dad would have said... But, that last go at the rest of the front teeth, which I had 11 left! Then to have that sewn up and put the dentures right in over the top of all of that where they were pulled... was not a great experience either... Honestly, I still have soreness around my lower part of my nose, and upper lip, even the "hinge" of my jawbones on one side wants to almost "pop" out of place at times. Many people say I am "LOUD" when I speak, but it is surely NOT from my mouth itself being big... in fact it is just the opposite... my mouth is so small, that is why my teeth were so crowded together, even after 2 or 3 molars being pulled thinking I would be getting braces years and years ago, and my 4 wisdom teeth laying cross wise down in my mouth having to be cut out because there was no place to go to pull them out.... I have always had to use a small fork and a small spoon to eat with... there is no way I could try to get a larger spoon in my mouth... like normal people do.... I got my "mouth" from Mom's side of the family as far as bone structure - a great deal like my Grandmothers on the maternal side... yet I got my Dad's side of the family - Teeth... which we all my son, my Dad, My half -Brother, the larger two top teeth in the front, and just a bit larger teeth that just did not fit very well into a smaller framed mouth such as mine. I went for eon's hating my teeth, and you would very rarely see me smile in front of a camera. So, I did get my wish of "beautiful teeth"... after I was 54 yrs old, and had to have mine gotten rid of and had "falsies" LOL.. put in... but hey, they are MINE and they are beautiful... sometimes we get what we want, but just not in the way we expect it to.
Thus, I am trying to once again be patient, hope that tiny little hole that is driving me nuts on the top right hand, where there is that little oral-maxillary fistula or fissure... that just makes it sound HUGE, so I don't really like calling it that , but that is the
medical term for what it is.... By the the while I am still trying to figure out the           #hashtag business of #rhia or #lupus or #rheumatoidarthritis or hummm what about #drcampo wonder what that would bring up... I do have something else I am thinking about doing... and if you care to join in, I would love for you too... One of the bit online health sites had a "blog" kind of contest that everyone could participate in for 30 days during a certain month of the year. Well, somehow I got my wires crossed (what is new)  so I had posted here and on my blog all about it. Then I got to seeing some of what I had actually found online was last year during a month, not new for this year... so of course after finding out for sure from someone there, I took all of it down from my FB page and from my blog. BUT... I had this idea since I sometimes have a difficult time trying to decide what "subject" to go with and write, I would use some of their ideas that I enjoyed thinking of writing about and doing for that the month of November on my own blog. I may mot be able to do it exactly ALL 30 DAYS... but it would be fun to just pick one & try and do one a day and write about an entirely different subject each day. NOW the FUN part is I would LOVE TO HAVE SOME OF YOU GET ON THE BANDWAGON and POST also on my blog... I could post the original idea, along with my "views" on the subject, then have each of you that wanted to - to put yours under it where you click to go and make a comment!!!! I may even make one post and just keep that one going all through the month, doing the same... so if you would like to joint me, feel free to take a look at my blog. I will post a few topics to get started with, and if you can think of something you might like to blog about or read about feel free to private message me here, or on Google since Blogger is part of Google... and we will see how much fun we can drum up :)  I will decide whether to begin "here" on a blog post with the ones for November OR whether to put them on another page... I will let you know for sure this week sometimes....

Perfection we find in one rose... and perfection we seek always in ourselves and into what we feel inside is meek....

Lupus?RA?Sjogrens?FM?CFS? Early Onset Parkinson's or Bartonella??? Here are some links and ideas to consider....

I am sharing this with all of you, especially those of us with Lupus, RA, MS, FM, ME/CFS.... ALL of us have had years before a diagnosis, then it seems we go through more than one most of the time... and then wonder if "the doctors have it right" or if they are also grasping at straws, and giving us a "diagnosis" to just calm out fears. I know for myself that is true. About a month ago, I saw a dear friend from high school, and am very happy she is back in our hometown. She had mentioned some information about a particular illness that usually comes from being around cats, or other animals, or things like fleas, ticks, than can be carriers of the illness Bartonella .... she was telling me about a doctor who of course more of them on the side of the "animal type" cat scratch fever... that just about all of us have heard of. The "symptoms" can be almost to the "Tee" of Lupus, RA, FM, CFS and so forth... severe fatigue, low grade fevers, flu like body aches and pains, joint pain, headaches... many of the exact same issues we have, brain fog, that are associated with all of these illnesses. Well, I took what she said to heart, about the doctor now believe that this illness, can very well be, the great imitator of some of these illnesses.... and later people have found out, they may not be "ill" with things like Lupus, or RA, or be manic depressive, or even one woman was diagnosed as schizophrenic... but they were infected with the Bartonella bacteria. Thus, it also goes right along with being very close to Lyme disease, and also I just has mentioned, after hearing from a friend that has "early onset Parkinsons'" that Lyme disease can be the great imitator of early onset Parkinsons.... so all of this kind of hit me like a ton of bricks... it could be that there are "many" or at least some of us that don't have any of these chronic illnesses, BUT have gotten Bartonella one way or the other (by the way I've been bitten badly by one of my cats in 2005 while in CA) and I've also had two dog bites in my life... so I have to wonder if in fact there is a possibility that all of this is some how related... I also know if you walked into one of your doctors offices and mentioned it, they may look at you like you are crazy and call the nut house to come and carry you away... but I have one link I am putting here and will put this along with more links on my blog....
http://www.galaxydx.com/web/human-health/ if you are also interested take a look... it sure does ring bells with many of my symptoms.



http://www.cvm.ncsu.edu/news/2012-05-04-Uncovering-Bartonella-the-Stealth-Pathogen.html 

http://www.lymedisease.org/lyme101/coinfections/bartonella.html 


http://www.cdc.gov/bartonella/

When You are Fighting Chronic Illnesses, Chronic Pain, Doctors, Pharmacies, and Medicare Advantage Plans - you need lots of ammunition and tenacity...

I have wanted to be able to get to this subject for all of you over the past couple of days. Of course about the time I have a "clear slot of time" open, my email decided to blow a gasket on me. I had also not known about a follow up appointment Mom had to have her semi-annual "cardio-sonogram" yesterday. So, I had to pick her up and take her to have that done yesterday. It's not that it takes that long, but by the time you dress, pick her up, have the testing ran, then get back, visit for awhile, and I also had a couple of errands to run, I felt like my day was gone and I did not get anything I wanted to get done accomplished.
Plus, I had "overdone" it and used to too many of my "spoons" last Friday, so all of the plans I made to do things around the house both Saturday and Sunday, got basically chopped in half. Saturday I was in so much misery, between stiff, sore, pain, a splitting headache, almost as if I had another Lupus or RA flare hitting, that I spent Saturday on the sofa for the most part, and that really frigged up what my plans had been. I have SO MANY things I want to get accomplished around the house, from repainting my kitchen, painting and redoing our spare bedroom that is our "music room", getting the floors put down in the kitchen and bathroom, and laundry room, we still never got all of the outside of the house painted... and things just really took a nose dive when Jim had the car accident, was in the hospitals for so long, in rehab for so many weeks, thus lots got put off until we could get back into some kind of whatever normal was as far as a routine. Well, we have still to find that "normality" or routine. I feel like I fly by the seat of my pants most days... either waxing and waning one way, or flopping around like a fish out of water in another. Nothing ever seems to come easy, no matter how simple, you can guarantee there will be some kind of snag in the line.

But, when I got this ridiculous letter from Humana, My Medicare Advantage Plan. I have had them ever since I first got my Medicare parts A and B, which was about 2006 or so. They have now decided I guess to probably NOT Pay my PCP enough OR my PCP has gotten "greedy", thus he will no longer be a "preferred provider" come Jan 1, 2015!!!! Which totally sucks green pecans, if you know what I mean. This primary care physician of mine is the ONLY ONE who out of all of the tests, doctors, surgeries, and so forth I had had, the LUPUS, RA< SJOGREN"S, and the list continues. Well, Dr. "B" as I will refer to him as, had just gotten to my home town and I was one of his very 1st patients. At the time he was brand new, he was "brilliant" when it came to "discovering" the unusual, he looked at everything with a "fresh" eyes, and he was "up" on the latest when it came to autoimmune illnesses. But, even though I was one of his very first patients, including I got MANY others to move over to him, because I so so pleased. He got me on the right medications, and I did go and find try to find a Rheumatologist, in which I did. But, the Rheumatologist were more on the end for the Rheumatoid Arthritis end of the ball park, Dr. "B" took care of the Lupus. When I have flares, he is the one that gives me the Solu-Medrol injections, the larger 14 days step down doses of prednisone. He also prescribes my MTX, Plaquenil, and small daily dose of prednisone. So, without him I would be back and forth to some doctor in Dallas, that would be the waste of an entire day, more money, more time, for something that can be handled here, usually by a phone call, me coming in, getting an injection, a script and I am on my way.

I am not quite sure who is the issue, probably both... it is a well known fact Medicare and especially the Medicare Advantage Plans don't pay worth a darned when it comes to the physicians, But, if you have someone within 5 minutes of home that can do the exact same thing, you save time, the doctors save time, gas, and things run much more efficiently that a trip to somewhere else for a Lupus Flare.

So, this letter that I receive from Humana explains to me that if I have "certain" health conditions that Dr. B takes care of, then they will make an exception and pay him as they always have. So, out of about 15 health conditions names on this paper, Lupus was one of them. So, I fill in the paperwork, send it off to Humana, and about a week later, very late one evening someone from Humana leaving a message about that paperwork. She said she would call back the next day, and so I expected to get a phone call from them the next day. But instead about 3 days later I get this ridiculous letter, stating that "Lupus" and Hip Pain (I have NO CLUE where "hip pain" came in what so ever") did NOT qualify and they would NOT continue after Jan 1 to pay him as a "in network provider". OMG, I was so livid, had it not been late in the evening by the time I got the letter Humana would have gotten a piece of my mind...So, of course you can send in a written grievance in which I did. I also boldly told them they were not going to get by with blowing me off like that. My "condition" of Lupus was serious, it was something that Dr. B is the very doctor who diagnosed it, he is the one that since 2009 or 2010 had taken care of me, which every time he fills my medications, he does the follow up blood work, he takes care of the "side illnesses" that go along with the Lupus, and not one other PCP is going to want to take on my complicated case due to it is a complexity that has to be kept up with. As Dr, B always knows exactly what is going on. If I have a "new" symptom, he knows if it is related or not to the Lupus, and he also takes cares of my mouth ulcers, thrush, stomach problems from Lupus. As I had said and we know for a fact, I can go from "well" to ill enough for ICU within minutes under some circumstances... just like I had double pneumonia back in April. No one was here but myself, so I did not realize I was running such a high fever I was all but see things and hallucinating. Thank goodness I thought to check my temp and even though I never run fever, I did not usually do so, and if it had gotten any higher I may have went into convulsions. Luckily, I was still smart enough and scared enough not to drive alone, so I called my Mom and had her pick me up that Sunday afternoon and carry me to our Urgent care Center. But, if that had been any other time during the week, I would have called Dr. "B" quickly, and found out I was running 103.9 fever, and had double pneumonia!!!! It was so bad the doctor on call at the center wanted at first to send me to the ER and possibly have me admitted. Well, at the time Jim was in Baylor after the car accident, which he was still in Acute Care and had just gotten out of ICU with all kinds of broken bones, a very long 9 hour back surgery, 17 broken ribs and it continued on. The very last thing I needed was to be put in a hospital down here, and have him in the hospital up in Dallas....

So, having a physician that KNOWS my health issues, ALL of them, how the interrelate to one another, and what has taken place, from surgeries, to the 6 weeks I spent in two hospitals, and almost died from what they can surmise had something to do with the Lupus. But, even in the huge hospital in Dallas, and all of the highly specialized doctors there, many of them were NOT familiar with Lupus, nor any of the health problems that come along with it.

So, I got to thinking about this entire scene, and it just makes me even madder than I was when I first got the letter from Humana! In the first place, IF HUMANA was PAYING the doctors better, then the doctors WOULD NOT be dropping out of being "Preferred Providers"... and if the DOCTORS were NOT SO MONEY HUNGRY they would be "settling" FOR WHAT THE INSURANCE pays them, and not setting their GOALS OF MONETARY GAIN so high they cannot either afford to pay the doctors better OR WORSE they take FOREVER TO PAY THE DOCTORS!!! This is NO JOKE and it came directly from the mouth of one of my physicians!!!!

He had TWO SURGERIES, and I know he meant very EXPENSIVE SURGERIES, because it was probably something like having a pain pump internally put it or something like a stimulator put in internally, which the doctor has to implant. Both of them are very expensive. Just the devices themselves run upwards of 50,000.00 or so.

Anyway, he had two patients that AFTER TWO YEARS OF dragging their feet, the Doctor had to take Humana Medicare Advantage plan to COURT IN FRONT OF THE JUDGE, and the JUDGE MADE THEM PAY MY DOCTOR!!!

But, it took him 2 YEARS to get paid on those two surgeries!!! If he has to wait to get paid on many of those expensive procedures, they will all go broke trying to keep up an office, pay employees, pay taxes, and keep an office up and running. It was insane to hear how long he had to wait and then for a judge to have to demand they pay him what they owed him. I just about let my jaw hit the floor. Now, I also know doctors charge WAY TOO MUCH, to try and compensate for what they are trying to make up on those cases they do not get paid, or certainly not enough. So, it is a circle in circle around and around the merry-go trying to get one hand to a one to pay the other. In the mean time guess who suffers through this??? Yes, you have it.... US, the PATIENTS!!! We suffer added money out of our pockets, paying for doctors and the clinics and tests, and in the end, half the time no one has a straight answer for us anyway. So, now this puts myself, my Mom, and Lord knows how many other patients just like us are suffering through the exact same issues. It is damned if you DO, and you be damned if you don't.

I have even threatened NOT TO go to a PCP anymore, but just use our "urgent Care center" here. They have their heads on straighter than most of the primary care physician. The 3 or 4 times I've been out there, one of which was for a Lupus flare during a weekend, and then I could go there and get checked in, checked out, have my injections, get my prescription and be on my way. To top it off they are the ones as I said above that diagnosed me with double pneumonia, took the X-rays right there, right away, were on the ball and I was out the door and headed home without any hassle. And out of pocket for me was my $40.00, plus I did not get exposed to an entire room full of germs and people running fevers, and possibly get something else, other than what I already had. It was a "pleasant"(if you can call having double pneumonia pleasant" experience, just due to the fact there was no hassle, and I was home and on my sofa within an hour and a half. It took longer for the pharmacy to get my script ready than it did to get through the Urgent care in itself.

Now you can get your flu shots, pneumonia shots, even tetanus and so forth at the pharmacy, they will even sometimes check your cholesterol, blood pressure and so on, including hearing test for free at different times. It is getting to where people don't want to step into the room of a doctors office, because it takes too long, they never answer your questions, once you spend hours getting in, they then herd you in and out like a bunch of cattle, not really bothering to answer a question one you may have. I've gotten to where even my "tricK" of taking my LIST of all the thing I NEED to talk about them with, and he is running out the door before I can ask the 3rd question. As someone who believes in researching everything myself, and also believes that MY TIME, YOUR TIME, OUR TIME IS JUST AS IMPORTANT AS THAT DOCTORS TIME!!! So WHY do WE wait for HOURS FOR THEM!!!


Then they have the audacity to post a sign if a patient does NOT call in 24 hours ahead of time to cancel, they can charge you anyway. But, I've had doctors CALL ME ON MY WAY TO DALLAS FOR AN APPOINTMENT and they tell not to come, because the doctor is out in an emergency or had gotten called away suddenly!!! So, now my day had been half ruined getting ready, getting dressed, wasting, time, gas, and everything else, yet it seems to be perfectly "okay" for them to cancel at the last moment. Believe me I felt like sending them a bill for my time and see what they thought about that.

I had read an article a couple of years back where I woman did just that. She had a doctor cancel on her two times in a row or something, so she did send them a bill for her time and trouble!!!  Whether she ever got able paid or not, but I bet it did put it on their minds. OUR TIME is just as valuable as anyone else's is... whether the doctor, nurse, surgeon or the Pope!!!!

Again though it takes time and tenacity to do that I can see where under the right circumstances it would get the attention of those who think they are "better" than use.


I would be interested in knowing how many of you with Medicare Advantage Plan and possibly have gotten the exact same thing. A letter telling us that our doctors won't keep them on and be "preferred provider" after January1st 2015. If you HAVE either post here, or send me an email because I would love to hear from you. Then also what are you going to do under the circumstances? Change, try to keep your doctor, just pay the "extra" amount and stay, or does it even matter....

Random Acts of Kindness Day October 21 and also additions to my blog

For one, October 21st has been named "Random Acts of Kindness" Day.... and as I said on Facebook... I try my best to always thank people, tell them to have a blessed day, to give them the respect and appreciation they deserve. To stand there and have to check out people on some days, I know has to be almost torture... People tend to not be in such a great mood when their money is flying out the door with everything so expensive ... thus sometimes that person behind the cash register gets the brunt of others frustrations...

So, try to make someone's day and it can be anything, big or small....

Also I have been working on my blog now for a few weeks... I've changed some things around, added some stuff, put stuff in a different place and I have also added lots to pages... the one "About Me" I wrote quite a bit on today. So, as you go through my blog, be sure you check out the other pages... I've added some to the "News" page, and some to the Illness and Medications pages... and I will continue to advance and add more and more as the days go...

I really want to make my blog SHINE and people really want to come here, so I have to get it really going well, so people will want to read it.

I will be posting less and less on FB and more here as you have seen me do...

That way there will be a link on FB to the blog.... and you can come here to read all about the news, information, medications, and so forth that is happening to me...

Be Well, and may your week be wonderful in many ways... Rhia

Invisible Disabilities Week!!!

http://invisibledisabilitiesweek.org/

Just because You CANNOT SEE IT - Does NOT mean that the pain and disabilities are not there!!!

Sharing the Excitement of the Coming Months! (Trying to Ignore the PAIN of these Illnesses - RA, Lupus, Sjogren's, MS, Myasthenia Gravis, Perniscious Anemia and the list grows)

I have been trying my best to "brave" the chill in the air, knowing that means several things. Shorter days, cooler weather, Fall colors and Autumn leaves coming down. Holidays here before we know it, cooking, baking, and the smell of Thanksgiving, pumpkin pies, rolls, wonderful home made quick breads, and spices like cinnamon, cloves, nutmeg, and those "pungent" aromatic hints that Winter is here, Christmas, and before we know it,  2014 will be a memory, and 2015 shall be in full swing.

My bones, joints and most of my body HATE the cold, aching, throbbing feelings that are the "bad" stuff following along with the good.

I LOVE to bake! I have always loved to bake anything sweet. From cakes, pies, cookies, cobblers, and the calories that go along with fudge, peanut brittle, and the confections that almost feel like they are going straight to my hips as I just think about them.

Alas, the fight against pain, fatigue, and stress versus the fun of baking, cooking, and the heavenly sweet potatoes, gravy, ham, turkey, stuffing.... and yes it makes me hungry just thinking about it. But l know that I must start early - each year even earlier than the last if I truly want to make all of those goodies, getting them all packed up with bows and in beautiful sacks, boxes or containers to give out to our neighbors. I recall the first year not too long ago when we did it, I had made like 5 different types of quick breads, fudge, fruit cakes, candies and cookies with ribbons and cards tucked away for remembering our neighbors and to bring good cheer to those who surround us with their friendship truly is throughout each year. We have wonderful neighbors. They do some great things for us during the year and we try to reciprocate with the baking and cooking.

It is also getting close to that time we make our "New Years Resolutions"  or more like rather than "resolutions" trying to set "goals" for 2015. Of course after March 26th, 2014, and all that transpired on that one fateful day; as I sat gracefully awaiting Jim to arrive in Washington DC, those words still ring in my head that "your husband has been in a very severe car accident". He was "ran over" by an 18 wheel tractor trailer...

At that very second, I knew that ALL of my "goals" for 2014 just were blew out of the window, thrown in the street, and ran over by a bus... train and then hit by a plane... Of course goals were the very last thing on the agenda once all of that hit.... every and any plans I had made for this year went out the window, bath water, tub, soap, and almost the baby... if you take the old saying to heart. ;)

So, the very last thing I want to do for 2015 is make "grand plans" only to be on the floor again, cleaning up the mess. Lord knows this year has been a ball of twine, rolled and knotted, with no signs of ever getting it ready to crochet a sweater from.

Thus, I with much hesitation begin thinking about my "gifts" for 2015. My hopes are that I do get to put as much of myself into the throws of activism, ambassadorship, volunteer work, and advocacy for all of us. We definitely NEED many, many more "educated" people when it comes to the world of Arthritis "101"!!! As a friend of mine and myself had an email conversation a couple of weeks ago, it continues to overwhelm me just how many people in our world, very well educated at that, do NOT get "ARTHRITIS" & all of our Autoimmune issues.

Many of the specialists we go to that are supposed to BE SPECIALISTS in these fields and have the knowledge to HELP US. YET, many of them are NOT educated, especially on the latest of technology, advancement in medications, & having so many clinical trials that have came into play, BUT we still don't have many of the answers we continue to search for.

I believe as "patients", loved ones, and close friends, we are "drawn like moths to a flame" when it comes to anything we can "throw" at an arthritic illness, autoimmune illness, chronic pain and/or other medical issues. We tend to spend more time researching these new ideas in science.

From a supplement, to an older drug used for malaria, to a brand new biologic making its debut in the news. We have made some head way by turning back the clock, starting over at the beginning of when it first arrived.  I am not sure if I believe in some of the stronger more advanced biologic medications. Some of the side effects that seem to be almost worse than the diseases, illnesses and syndromes themselves.

So, as I am contemplating the things that so far have been "diced, sliced and served up" on my "plate" for 2015, my hope is that I will be able to continue to do those, along with find the place where my "voice" is for my next book. I had made myself a wager, that I would at least complete 75% of the 3rd book by the end of this year. Alas, as I began stating in this post, never will I again allow myself to get so overly thrilled with the idea of finishing the 3rd book that I forget the many factors that can "over throw" your ideas. And if they can, and do... they will.

I pray that I DO get to write that book. It maybe the last one I complete, but I will be always trying to strive to write daily, no matter to be published something once again. Life begins where it wants to... sometimes and then it takes you further and further into the realms of distant waters, surrounding you with ocean waves and not one iota of land in sight. After days and days  the clouds roll away, the thunder and stormy waters return to a calmness, and "Voila'" you are back on the correct path again, with the sun shining on your face.

Cherish those moments.... never let anyone or anything keep you from "your own dance".....

:I will be adding my "list" of things I would love to see me get my "teeth into" firmly.... not as in a vampirical status, but in the place that I can "taste" what I have been put here to do... help others...

                                                                                                                                                                                                                                     

PERSONALLY - World Arthritis Day...

Personally, I've not put much up for WAD! I have been so busy wanting to get pertinent information out there from the URL's and so on, that I haven't taken the time to "step up" to the plate and give my own feelings, impressions, and how things are looking for myself and my own issues with Arthritis, both Osteo and RA. My other AI's from Raynaud's to Sjogren's, from Lupus to MCTD, from the upheavel of medications that we are constantly changing to try and find a combination that "works" for me, doctors, new symptoms, how my Medicare Advantage Plan appears to be taking a run for my money next year I fear, to all of the "busi-ness" of life, of the accident of course we are still dealing with, left right and center, to my own personal issues with my writing, and what I want to do at home, versus what my body "thinks" I should do.

My Sjogren's issues are far from over. I still have another at least 6 weeks possibly more, before I am able to really stand to keep them in my mouth all day long, eat with them, and adjust to how they feel. I am learning to
keep them in to eat now, but the bottom plate just does not cooperate as it should. Once those mini implanted pins are set into my bone, that is supposed to stablize the plates, both top and bottom, thus I so hope and pray that is true. I know if this does not do the trick and gets them where they are more comfortable, I may be like my Mom, and have to take them OUT when she eats!!! LOL! I always wondered why when we go out to eat, (she has partial plates not full ones) that she takes both of them out. Now I totally know why she does it. When I eat of course food sticks in them, much like your own teeth BUT, it is not exactly the same. It is much more difficult to get food out of the plates once it gets underneath them and all that packs underneath them. The ONLY way to get it out, is to excuse yourself to the lavatory and clean them out. I would much rather do that though and eat with them in, rather than have them lying on the table as I eat!!! Kind of defeats the entire purpose of having them, and going through all of the trouble, time, pain, and suffering to reach the goal.

The weather is REALLY reeking havoc with many of us. I know here in Central TX we are having a dramatic change in temperature, of humidity even during one day. The humidity might be almost 100% in the morning, and by the afternoon drop to 30 percent. Plus the days are beginning to get "shorter" and I just not am adjusted to the longer days. It really does suck, or at least for myself, it sucks to have yourself in the midst of a change just about the time, your internal clock sets itself.

The Sulfasalazine, which I thought we would be up to 3,000 mg by now. Yet, due to lack of communication between my Rheumatologists nurse, myself and my Rheumatologist had not realized he told me to take 2 of the pills - 1 at a time for the first 14 days. Then begin taking 2 pills at a time, twice daily.  They are 500 mg tablets... so two of them make 1,000 mg a day, then I was to take 1,000 each time and read I could go up to 3 of the pills twice daily, which is usually what an RA patient works up to after a few weeks of the medication. So, 3 at a time would be 1,500 mg and time 2, make 3,000 mg a day. I already know my blood work was okay, because my PCP ran it for my Rheumatologist, and they told me the results when they were faxing it over to the Rheumy.

I am getting quite disenchanted with the biologic medications. First of all, my insurance can't make up its mind which ones it wants to pay for and which not. They used to pay for Humira, Enbrel and Orencia. But, they did NOT pay for Simponi, and when it is an infusion, it is hit and miss as to how and what they pay honestly. I've already tried Rituxan, and the last round, is when I came down so ill with the double pneumonia. Even though I am almost positive the medication only played a small part in the illness, with all that was going on there, my Rheumatologist is not really thrilled about taking a chance again with a biologic that seemed to contribute to me having infections. I show to already be having some chronic lung issues from what the Xrays show from the pneumonia, and it is kind of like an asthmatic chronic COPD thing, although smoking also probably has little to do with it. I smoked a total of about 10 years, and never over 1/2 pack day, most of the time less. I've quit all together, and even though we still have the "e-cigarettes", I am not even really using those. I just am not having any type of "craving" for them. Some days when I am really in horrible pain, and/or really badly stressed out, I may think to myself, damned I wished I had a cigarette, but other than that I could care less. Of course for me, I could go and buy a pack, put them away, and just smoke one when one of those "moments" come... I probably would not even smoke an entire pack in a month, probably more like two months... but if some people have even one, then they have to have it all over again... strange as it sounds its true.... Kind of all an alcoholic or any type of an "addiction" one might have... some people just cannot be satisfied with a tiny bit, and then leave it alone for a long while. Only using that, whatever it may be, only on those horrid days or moments that life feels like it is pulling itself right on over the top of you, and the darkness continues to grow and fill in like a dark black, no way see through ink or pain. 

I've been working on some other "volunteer, activist, advocate, ambassador type of projects", in between all of the doctors, medications. lawyer junk, paperwork, pain, and feeling generally like hell lately. I feel like I have found a couple of places, beside my blog and Facebook pages to truly help others and bring more awareness to all, especially when it comes to our health care laws, Capitol Hill, Congress, and all that can involve. I have come face to face, and toe to toe, with my Federal Congressional Representative Barton, and some of his staff. I have also been trying to find contacts in the office of our Senators here in TX. Actually I am trying to get the attention of both our Federal and our State Legislatures!!

Wow, talk about an education to learn how the wheels (clogs), (clocks esp. cuckoo) ,the bureaucratic bunch of bull red tape, the bend over and kiss butts groups, and talk about really learning how the "cow chews the cud" - I have so seen with my own eyes thinking that I was "up" on the political scene. Well, I have definitely found I had more to learn when it came and will continue to come face to face with the entire ordeal, full circle of how MUCH politics effects EVERYTHING!!! From business, to taxes, from your home, to your safety, from flying to riding in a car, from makeup to your hair coloring, from the BC powder I take, to the prescriptions medications.

It just amazes me the older I get, the more I know, and the more I have to learn about. There is never a day that goes by, that this old dog' seems to learn a few new tricks! I believe that is a portion of your "legacy" of having chronic illnesses, especially Autoimmune Illnesses. You are just given over a brand new educative process... because if you wait to let our "health care nation" educate you, more than likely you will NEVER understand a damned thing that is wrong with you, physically, mentally, emotionally... and within your world. Our "world" in the autoimmune "bu-si-ness", it a totally realm of birth right that has light and dark at the same time shining and blacking out our psyche. If you EVER ARRIVE at that MOMENT you "get it"... you can bet within 24 hours, all you figured out will be shot down, and went to hell in a hand basket, if it has a thing to do with AI diseases, syndromes, illnesses.... have you ever wondered what the difference it is between an "illness", a "syndrome" and a "disease"? I have given thought to it, but up until this minute I guess never decided it was a huge enough ordeal to look it up. But, since I am sitting on that "needle" the proverbial one in the hay stack... I am headed to "google" the differences. I will post them below, before I go on with my blog post.

All of these did come out of a "medical dictionary online"---

 Definition of ILLNESS: an unhealthy condition of body or mind : sickness  

 Definition of DISEASE : an impairment of the normal state of the living animal or plant body or one of its parts that interrupts or modifies the performance of the vital functions, is typically manifested by distinguishing signs and symptoms, and is a response to environmental factors (as malnutrition, industrial hazards, or climate), to specific infective agents (as worms, bacteria, or viruses), to inherent defects of the organism (as genetic anomalies), or to combinations of these factors : sickness, illness—called also morbus

 Definition of SICKNESS

1: the condition of being ill : ill health

2: a specific disease 

 Definition of SYNDROME : a group of signs and symptoms that occur together and characterize a particular abnormality 

 Definition of PHENOMENON (or Phenomena) as in Raynaud's Phenomena

1: an observable fact or event

2:  a : an object or aspect known through the senses rather than by thought or intuition b : a fact or event of scientific interest susceptible of scientific description and explanation ....

I really do not feel looking up those even in the medical dictionary helped much. They still all come out to the meaning of the odd... but when I have more time, I know there has to be an in depth reason for calling something a "syndrome", rather than a "disease"... or they would just have called EVERYTHING one word... illness, disease, sickness, syndrome, phenomena,  ...

Anyway, I got all off my own thoughts, walked away from the computer and decided to take a long, warm shower. It has cooled off here today and been on of those dreary days of a typical Fall. No sun, all cloudy and our temps have dropped down, and feels like we have had 2 early mornings, at the 57 degree range... Just plain cool first thing in the morning!! And as ALL know or most, BONES and JOINTS that have arthritic issues, or those that have autoimmune illnesses, this time of the year is not our best. Many of us go into almost a "hibernation" mode... We cringe at the thought of the "cold" weather coming in, and the grey days tend to bring on a depressive way of thinking... As we know seasonal depression is always around in the Fall and Winter... and then we have the pressures (if we let them) of the holidays, family, friends, parties, cooking, cleaning and all of that bologna ... as much as we all love family, holidays, friends, and the beauty of the Christmas decorations, trees, all of the sparkling lights... none of that really makes a difference if your body feels like heck... then your holiday spirit feels down in the dumps too.

Around here for me, it has seemingly turned to either feast or famine. I am either running around trying to get everything taken care of, and wondering how I will deal with it all... to the place I am "looking" for stuff to keep be busy. Oh, it is not like I don't have plenty to do, because I can assure you, just right here in the house alone, I have some major projects staring me right in the face.. I really have wanted to redo my entire kitchen, including putting a new counter top on. I was going to just pick one out that is already "pre-made". I noticed they sell them like that at Lowe's.... and it would be perfect for me. I would not have be to concerned about how the heck to do it... it should be more or less pre-pieced for me, and the edges and so forth there to purchase to put the finishing touches on it, I would LOVE to be able to get a TOTAL KITCHEN MAKEOVER!!! New Cabinets at the the doors and hardware, sand all down, brand new handles and pulls... the floor that I've wanted and to repaint it the two blues I've picked out. Then we still have the bathroom that needs the walls completely finished as far as the texture, and even though the lights are up, nothing has been wired in... so the bathfan and all of that I will have to have someone come and help me with that part. I just don't think Jim will ever be able to get back up into the attic again to connect everything. We have it practically finished but that most important part of making sure all is wired in properly, and not going to short out etc... I am not that sure of myself. I've put in water heaters, hung and wired ceiling fans, and done quite a bit of DIY stuff over the years, but between being "eaten alive" by RA, Lupus, Osteo etc... the idea of climbing into the attic and trying to do that sounds like something I should get an expert to do.

Now as far as painting, redoing our music room... getting rid of junk etc... all of those things I will do slowly, and could manage most of it myself... laying the carpet, and then the floor in the kitchen will probably mean getting someone also to help out.

At the time we bought the house, we put a great deal of money in it redoing it. The house was a definite fixer upper, so we redone hardwood floors, completely redid the bathroom even making it twice as big, painted everything inside and out, every room with our "wainscott" look that I am so thrilled with even today. We had to buy all new appliances, had to redo the entire water, sewer, and redo the electrical wiring. The house was in need of so much... and we did manage to do many of the things we planned. As "frugal" as I was though, money ran out before we got through.  

I realize this is "NOT" a typical Autoimmune post full of what all is going on physically, mentally and emotionally in regard to illnesses...

But, I also needed to kind of update everyone about where things stand for myself ...

My plans, and one of those IS to WRITE my BOOK!!!! I've been giving some serious thought to exactly what I want to write; along with how I want to do it. I am keeping the title that Jim came up with, because I believe it will fit when all is done..

I got a bit pissed this week. A guy who also wrote a book of poetry, about 80 poems,  had an "author's reading" and signing at our library!!! Well, everyone made a huge ordeal out of it, even in our daily newspaper.

YET, when I wrote BOTH books... I had to almost beg to get an article in the paper, and I donated copies to our library... and not one soul ever mentioned me reading them, or doing a signing... and MY TWO BOOKS contain about 3 or 4 times the amount in his...

So, I am NOT going to allow that to happen again. My plans are to MAKE SURE I do a reading and signing of my next one... and I hope to have a "full house" at the library as he did....

Sometimes this world is truly NOT fair....

Okay I close for now with I hope you have reflected today on what World Arthritis Day means to you.... and that if you got to go to events etc... that you did so full of joy and meaning... 

Keep watching because they will never get rid of me! :)

Rhia 10-12-2014