Fatigue, Stress, RA, Lupus, Sjogren's - Holidays and Looking At The New Year!

Surviving Our Own "Impossible" Schedules with Autoimmune Arthritic Illnesses

All of us, and I mean those that are "chronically ill", as well as those "healthy as horses" - tend to try and live up to our own "no way, no how" over the top expectations; especially during this time of year. Annually, when Thanksgiving gets here... We are constantly pressing ourselves to do more, buy more, be more, have bigger, better, larger parties, more guests, a "prettier tree", more goodies, a "luxurious dinner", fit for queens and kings. We want to give our children a "Wow" of a holiday season! We love seeing their eyes sparkle Christmas morning! :) I know I did! I'm sure all of you did and do also!

Yet, what about the "we" in all of this "We Wish You A Merry Xmas"? When I say "we", I mean US, those of us "we's" that are extremely fatigued from autoimmune arthritic illnesses. I just got through sending an email reminding a dear friend of mine to "take care of herself". She suffers from the misery of RA, and a cross of other AAI also. So, I knew she was busy, with home, and with her volunteer work, where she is a "co-founder" and an active volunteer. When you are kind of a "co-chief", cook and bottle washer, no matter what type of "work" it is, it is WORK! Even as a volunteer I can attest that I am "trying" so much more with my volunteer work, than I probably have in many years! As much as I push myself on writing my books, I don't think I do that as much as I am doing in order to try and give a piece of me to help others. When you are involved with a fantastic group of folks, that ultimately share your exact feelings and goals, it does make you want to "be all you can be" and "do all you can do"...  And that is NEVER a "bad thing". 

I am so grateful to have another "pathway" to guide me into the realms of where I can make a difference for others that live with the horrendous illnesses, that seem to creep upon us when we least expect them to.

Yet, we also still in some capacity have our personal "holidays" chores. Whether you are younger, with a job, children, spouse, or even if you are a bit older, kids gone, and just the two of you, or like Mom on her own, there is always something that needs to be done during the holiday season, and for the end of the year. 

I am already feeling the "stress" of my own expectations. I have a "mental" list, and it should be more like a WRITTEN on paper list before I forget half of it, of the "To-Do's" I need "to do". Let's see, my Christmas letter is still not finished, my tree or any decorations are not up. I have another batch of fruitcakes to make; along with cookies and fudge (if I date attempt it again this year). Before the holiday, I have a pain pump that will have to be filled, medications that need to be refilled, my Mom sounds like with her own issues with severe shoulder pain probably needs to get into our orthopedic doctor, and my husband is still waiting on the MRI results from his own severe shoulder pain, that they think maybe his neck. I have to get myself in order for a trip to OK, IF the weather allows and we  decide to spend Xmas day there, rather than at home. I have my blog here to keep up, as well as doing my volunteer work for IFAA and I need to get a blog post written for Systemically Connected, which is IFAA's official blog. 

I need to buy stamps so I can put them on these cards, and actually still have a couple of cards that need addresses. Never fails... either someone moves, or I lose an address... and then I am scrambling to get what I need to send my cards out. 

I did get my cards out to the "Troops" and made the deadline, ahead of time thank goodness. Then of course there are those "errands", if you are buying gifts, that in itself is a headache. We are not really doing that much as far as "gifts" this year. Our finances as they maybe, have taken a "hit" between all of my doctor and dentists bills this year. Plus we still face whatever my co-pay may be on the hernia surgery, and we had to pay some on Jim's MRI, which are not cheap. After my other older I-Mac decided to go "feet up" on us unexpectedly, this new one was not an expense we were expecting. Same with our old vacuum cleaner. Another one of those not anticipated "out of your pocket" expenses. My old one "threw a belt" LOL... but the issue with that was "good luck" finding a belt locally for the stupid thing.  I could have just ordered one, but in all honesty that "purple monster" as we called the old vacuum, was SO HEAVY, I just could NOT push it around anymore. Needless to say, I came in with a MUCH lighter brand new Bissell, that will almost suck the carpets right off the floor! :) In fact, with a couple of my older rugs that are just runners, and I did not pay nearly as much on, are losing their backing... it is just coming off of them because they are just getting old and ready to be replaced. Always something... oil in the car needs to be changed, the house taxes are in, thus a reminder those will come due shortly! 

Then the "Happy New Year 2014" rings in with a new rush of a New Year and all of those "tasks" that also "ring" in annually. Taxes to pay, house insurance and car insurance to probably come time to renew. Taxes, which I do my Mom's Income Tax forms and filing, and all of the other 100 items that come in like a flash of lightening through the black ink darkness of a clear night's sky. 

Alas, it is my time to begin thinking about my own personal "Agenda" for 2014. Call it a "Resolution List" if you wish, but I have one each year with some things that are probably pretty standard for all of us. 

Well since I just posted on FB! I shall add it here to finish this post off and post it for everyone! You shall see what I've been doing since very early this morning ;)

Okay!!! One MORE project out of my hair;)  I should not say that at all. I just finished getting my "annual Christmas letter" finished, printed and put in my Christmas cards! ;) LOL! I always "say" every year, Oh, I am going to "skip it" or make it shorter, and of course, that NEVER happens. It became a tradition many years ago by a cousin of mine in TN. She is older than me, so when I was younger, I remembered Cathryn's letter every year in her Christmas Cards. I loved it so much, that after I got up and was sending my own cards, I began the "tradition". I don't think I've missed any honestly. Not even through out surgeries, illnesses, etc... I've been fortunate enough to be able to get it done. :):) Anyway, I finished it, and I feel awesome to have them ready for stamps, and the post office!!! LOL! Of course, I have NOT put up ONE decoration yet. But, with Jim's shoulder/neck thing, and my stupid "hernia" thing... and now my Mom is having massive pain with her right shoulder - which I think is also her neck. I've got to get her into a doctor. She has an appt with our PCP tomorrow, but I know he won't be able to do anything, but send her to an orthopedic specialist. Then we are going to have to have out if it is her shoulder, or her neck. Mine was both! So, I know that will be a hard row to hoe with her. She is NOT a "hospital person".... I saw that when she was there just overnight with her heart monitor incident. Then with the wrist surgery, I thought I would NEVER get her to get it repaired. It took me months and months to get her to go and have it done. She uses "me" as an excuse... LOL!!! And that has to stop.... just because I have "illness issues" does not mean she can just "wait" and not have it fixed... We just have to work all of us around one another... talk about a mess... my surgery is scheduled for the 30th for the hernia... which means I will probably not be able to do much but be on the computer or sofa for weeks... esp. no carrying or lifting, well heck, how the devil am I supposed to survive if I can't do what I need to do??? ;) We always manage... but with Jim and his own neck..shoulder issues, it won't be as easy as usual... anyway we maybe all looking for "nurses" at our homes.... HAHAHAHA!!! I wish all a good rest of the afternoon... it is still COLD and nasty outside here... so I am headed to get stuff all ground up to make another batch of fruitcakes... well I hope... I am already exhausted. I got up at 3:30 this morning... and have not stopped since.... 

Just to Mention a Couple New things on My Blog...

I am not exactly "patting myself on the back"... BUT I will say that I am eager to know what you truly think about the new "background image" on the top of my page, under the name and description of my blog! I had began working on the 'idea" for a couple of months. But, nothing I could think about or picture in my mind, was exactly what I WAS going to do. I didn't want to do the "same old thing". Yet it needed to be new, fresh and reflect what my blog is all about.

I thought about graphics and photos. But, those would be too MUCH in color. Even if I made the opacity extremely light, it still maybe too dark for others to read the Title and the Description, So, I opened up my "trusty" Photoshop program, that I have not played with or done anything in, for a long while.

Thus I had a picture in my mind of "words", words, turned and kind of "twisted and "turned", arced one way, then the other, much like our lives our and our bodies "feel" when we are afflicted with these diseases.

So I picked a color scheme I felt would match my blog background color, fixed a new file in PS (PhotoShop),  and began doing some thinking and rendering; then came up with a beautiful array of colors that matched the back ground colors of the entire blog page. I made a mistake at first in my "pixel" sizing of the graphic. For some reason I thought it needed to be longer and a bit thicker for it so that way it would match up as it is supposed to. I didn't at first think about resizing from the beginning because at first I figured I'd more than likely be "blurring" the names of the dieseases, or "skewing" it where you could "read" them but it would be more in the background of your mind, while the readers are actually looking more at the title, the blog posts, and so as I began to arc words up and down, turn them in one way, then the other, in rotation.

About 3 hours or so later, plus a couple of questions answered by the "Pro" here in the house, Voila'! A new background Image all of my own making... ;).

It is posted hook, line and sinker on my blog. I am so thrilled to have it up now. I also found out a couple of new things that I was able to also use here, and I hope it will help get me and my blog more out in the advocacy world, where I can hopefully do some good...:)  Pray for good vibes!!!! :):)

Advocacy in the realms of "chronic illnesses", takes a great deal of tenacity to get your thoughts, research, your own experiences with those around you....

Please leave a quick comment and let me know what you think ;)
                                                                                 

Holidays, Autoimmune Illnesses, Pain, Stormy Winter Weather, & My thoughts about Christmas...

WOAH!!  Darned....  It is now thundering and lightening here like it was a Summer Storm! I don't know whether to look for ice or a tornado! Talk about some STRANGE weather! Supposed to be about 31 here, and dropping all day long... raining here, but could turn to sleet and freezing rain (what is the difference)?... anytime... just too weird.... I did get something accomplished yesterday finally. I got almost ALL of my Christmas Cards made out and addressed! :) Still have to finish writing my Annual Xmas Letter though  ;) since it appears I am going to be "rained, iced, and plain cold weathered in" I hope I can take advantage of not having to go run errands. I also fully intend on getting some of these "projects" around this house, and online done and completed! Honestly, I have not put up one Xmas decoration yet. And honestly, with everything going on, I don't FEEL like putting up any Xmas decorations yet... Jim went for the MRI on his neck Wednesday. He has NO insurance so this pay out of your pocket, even with a discount crap sucks. He had to have them start over several times. He said trying to lay with that neck a certain way, just sent him into horrid, unbearable pain (in his shoulder). The pain is NOT in his neck at all... it is his shoulder that is in pain. Kind of like mine... first it WAS my shoulder... they replaced that and THEN it WAS my NECK! So they did surgery on that. I just don't know what to even think... We both just want an answer about the pain. He has been dealing with it now for well over 2 months. And it just gets worse. And as I said above with NO insurance, we don't even know what we will face if there is something that needs to be surgically fixed. I want to hope it is something NOT requiring surgery. But, if I look at it honestly, he is in way too much misery for it to be anything "simple". I just wonder if they have it right. You know, you never know. WE also don't know how long it will be before we have results. From what they told him at the clinic itself he went to it might be awhile. Here I am going into surgery myself on the 30th for this hernia (quite honestly, the right one is getting larger. I just have to wonder if he doesn't need to do both of them)... and I'll not be able to lift, bend, etc... for weeks from what I've read. So, that just makes everything about the holidays feel more stressful... We MAY go to the Casino if weather allows actually and spend the night for Xmas. WE all have 2 free nights rooms... and we can do that, have an incredible Xmas dinner... and not have to cook, clean and so forth. Plus we would have ALL of the "lights" and decorations you can imagine! :):) LOL! everyday in there sounds and looks like a holiday! Now, I want to clarify a bit about how I feel about Christmas. I am ALL about family, love, hope, and what this holiday "truly means", rather than the "commercialized", expensive gift giving, going into debt for year giving, having the biggest, best, and grandest decor, lights, and all of that... I feel that Christmas should be celebrated with an Awe, Wonder, And Glad Feelings of the Birth of Our Savior. It is about the spirit that guides us through this world daily... giving us and unselfish love... that we should pass on daily to others.... Sure I believe in the tree, some gifts, great food, and pretty decor... it is a part of the holiday, as long is it is done in the "right frame work" of what this entire Season of Christmas, Thanksgiving, and the New Year means and brings. Our "commercial" world has honestly ruined the true meaning by being so greedy, they can't wait until even the "day after" Thanksgiving, but now ON Thanksgiving to start to open and have people fighting over things to buy!!! They have "Xmas Decor" up with the Halloween stuff! I just don't believe that "employees" especially in the "retail" market should have to work at all on Thanksgiving and Christmas. Especially Christmas... it is a time that NO PURCHASE should be allowed or necessary. No one needs anything so badly that they need to get it Xmas day! Either get it before or the day after... and I get some health workers, and so forth must be on duty... there are some areas where it is a necessity to have a "skeleton crew" on board. But as a whole the retail business has just ruined the holidays for many of us. I hope that everyone finds the "true" meaning and blessing of this coming Christmas! May love win over all!!!!

"IFAA" says "It's Time!"

It's Time For Action! It's Time For a Change! It's Just Time!

www.ifautoimmunearthritis.org

Sharing an Article from "Mind Body Green" about "10 Things about RA"

I am happy to share a great and informative Article written by Tami Caskey Brown, from the (IFAA) International Foundation for Autoimmune Arthritis! She is one huge asset to the advocacy to help the fight on RA and the other Autoimmune Arthritic Diseases! I happen to have the great privilege in getting to know Tami and also help her on the great work she puts in on the "Media Awareness Hotline" portion of IFAA's fight against these diseases. The link below is to her article on the "Mind Body Green" Website! Please check it out as well as their site!

"Mind Body Green" 10 things I wished Everyone knew About Rheumatoid Arthritis

http://www.mindbodygreen.com/0-11806/10-things-i-wish-everyone-knew-about-rheumatoid-arthritis-ra.html

You can see more about what is happening at IFAA and what the "Media Awareness Hotline" is all about. It helps to stop articles, papers, news and media items that contain "misleading" or inaccurate information on RA and the other AutoImmune Arthritis Diseases.

International Foundation For Autoimmune Arthritis Media Awareness Hotline

http://www.ifautoimmunearthritis.org/Awareness_Hotline.html

Whittemore Peterson Neuro-Autoimmune Institute

More News on the World wide front of Autoimmune Illnesses... and another "term" new to me "Neuro-Autoimmune?

I just got a "newsletter" from the Whittemore Peterson Institute. It contains a great deal of the research their doing in regard to FM/CFS/ME. Of course their beginnings are from the 2 doctors that actually discovered CFS/ME - and FM as a "real illness". Most know the story about the small town in Nevada, where suddenly many residents that were very healthy suddenly, with no explanation became so very ill that they were unable to work. This "mysterious illness/syndrome" whatever you want to call it, was bringing in patient after patient to this small clinic where the 2 physicians quickly became overloaded. Years have passed since the first "signs" of these illnesses began. We have been through all kinds of phases, as patients and I can say doctors also. NO one knew much about these. Doctors thought for the most part patients were (especially female patients) were "depressed" stressed, or plain hypochondriacs. Often with a recommendation I am sure that you need a "shrink". Also it was a "waste basket" diagnosis for awhile. Doctors saw patients with some symptoms of FM, CFS/ME thus if they could not really get a good understanding of what may be wrong with a patient, they had FM. And they left a doctor's office horrified. I know I did! I was told this MANY years ago, back when it was either put upon mainly women who exhibited many of the symptoms, and were "busy" wives, Mom's, employees, "chief, cook and bottle washer" of their lives. So "stress" and "depressed" was how we were treated. No really know "reason".. not a virus, not an infection, not a flu (even though symptoms can and are often "Flu" like)... and not a whole lot out in the realms of medicine to explain it. It really wasn't until about the last 5 to 7 years, I've seen a dramatic change in how patients with these illnesses are treated. First of all, you are taken "seriously". Now, FM/CFS/ME are REAL illnesses, so you have a REAL DIAGNOSIS, thus you expect  explanations of why, how, when, what, where and why?  
Why? You also expect to be told what the "treatments" are, and when will I "get over this"... "yuppie flu" (another horrid term used)??? A couple of years back the Whittemore Peterson Institute became very well known throughout the world. They seemed to be "the beginnings of those questions, and also possibly how to get better, treatments, and mainly what it is, how did I get it? They came out with a huge "clinical trial" per se... that showed great promise to those inflicted parties. It was based on "mice" and a "viral" type manifestation, and it spread like wild fire throughout all of the social media, twitter, in news articles... patients, doctors, everyone was talking about this "answer" to these illnesses. It was a bit of a while, but after the glory came disappointment. It was told that these "trials" had not be as exact as the should have been. There were many errors made during all of these that caused for the entire study to be trashed. This "retro" virus that all had hoped answered the call, turned out to be not trustworthy, incomplete, and just brought a downer to those in the middle of these illnesses. Since then, WPI, has been doing some incredible research by many very great people in the medical world, and the discoveries that they are now making DO SHOW GREAT PROMISE! As I was reading over the newsletter a little while ago (and is the POINT to this long post, is that NOW these illnesses are being "grouped" more as "neuro-immune" diseases. In fact the WPI now has their clinic speciality labeled as "Neuro-Immune" Diseases. As I read this, what I have said for a LONG TIME, and what brought it really to hit "home" of course "immune". I've been SAYING for YEARS, these illnesses are in the same scenario and are "autoimmune illnesses". They just have not proven it, but now, "Neuro-Immune surely says it all. I told my husband I WISH so VERY MUCH, I had went onto BECOME A RESEARCHER, in these realms. If I were not so chronically ill, and taken over with brain fog, plus was still around 40 years old... I WOULD GO BACK TO COLLEGE AND GO INTO CLINICAL RESEARCH FOR THESE AUTOIMMUNE illnesses/diseases/syndromes.. it almost breaks my heart, that I long so much to be able to "find a reason, find ways to stop these, and a ways to treat those already with all of them. And I am speaking of All Autoimmune Arthritic and Autoimmune illnesses in general. Life hands us what we are so often not able to reason with... and I don't know "why" I did not more fulfill my college and so on when I was younger... plans change, you "fall" more like "trip" into love... and you let YEARS slip BY... you are 50 +, and chronically ill... thus your "research" is what I and all of you do... advocacy!!! I guess this post is for everyone... ill, not ill, young, elderly, college, high school, wherever you are, whatever you are doing, whatever your dreams maybe.... don't WAIT until all the YEARS PASS you BY... and then like myself, have to live with some regret, that what I almost feel I was "meant" to do, slipped through my fingers, like sands through a sieve. by the way I think I can attach their newsletter....I have their newsletter in a PDF... I'll try to put it on here and then let you now.... in the meantime here is their websitehttp://wpinstitute.org/index.html

Some of My Posts are worth "Repeating"...

As I went through Facebook this morning to read any new posts there, I found that one of my dear friends went to see her Rheumatologist yesterday. The prognosis was that her RA is worsening and is affecting her vision due to inflammation. So, she is headed for an opthamologist. I know that I had told my "horror story" over the "Neuro-opthamologist before here, but since I decided to tell the story there again for many that may not have seen it when it all took place, I also thought it was very "well worth" repeating again. The LONG of it, and it is long. That is the ONLY way I know to write about it. Start from the beginning about the double vision, since that sent me to an eye doctor in the first place to now when I am still waiting to hear from the Medical Board about how that doctor was "punished" if at all. So, below is how I told it this morning (very early) on FB. I still, even while I wrote it out again this A.M., find it almost too ridiculous to believe! I have had my "rounds" with doctors in the past, but nothing like what happened early that morning at one of the hospitals in Dallas in the operating room I was in.

My post from FB:
 It is wonderful to have a great rheumatologist that helps like that. Mine is an angel from heaven also. I one began to "see double". I first noticed it while watching television one evening. I would "see" the real car in the movie, then right behind and a bit upward I saw "another" car duplicate. It scared me so badly. I am on Plaquenil so I have to see an Opthalmologist annually. It began to get worse, and I would notice it then outside during the daytime. I went to my regular Opthalmologist, and thy put a "sphere" in my glasses. But, they sent me to a Neuro-Opthalmologist. There are only like 3 in the state of TX! Two happened to be in Dallas. The first one is a great doctor but his "bedside" manner was like a BRICK! Worse than that. He saw me like three times and told me NOTHING! He barely even looked at me, all of his 50 "staff" members seemed to do all of the exams. He decided since my "inflammatory" levels in mu labs were up, I may have Temporal Arteritis, which meant LARGE doses of predisone for like 2 YEARS! I mean something like 40 mg daily, which means my osteoporosis (mine is already SEVERE) would just get worse if that is even possible, I would puff out like a balloon (I already gain weight when I have to take the 14 day step down of it with a flare), my skin is already paper thin, my teeth are already having to be pulled out and decaying like crazy, I already bruise extremely extremely easily and I STAY bruised in some places forever, & so on. Every "bad" thing prednisone does I already more than likely have. As my PCP calls is the corticosteroids are a "necessary evil" for many of us. Needles to say, this guy did a "temporal artery biopsy". He never told me "how all that happens, what he would do etc." I had to look it up and then I even questioned my PCP again and asked him if he thought it necessary. Since I was already on a daily small dose of prednisone, even IF I had the Giant Cell Temporal Arteritis", it probably would not show on the biopsy anyway. So, I had it and that is another entire nightmare story! Basically, I had to file a complaint to the Texas Medical Board. He "blew up" at the nurse that was with me in the surgery room, while I was just waking up barely from the procedure. It was so BAD (I was STILL on the operating table!!) that the Anesthesiologist stayed with me to make sure nothing happened to me. Plus there were about 20 other employees standing where all of this took place, as he continued to YELL, CURSE AND SCREAM AT THE NURSE!!! They were standing at the ONLY DOOR OUT, thus I was there for the entire thing. They even called security on him. It is insanity to say the least. It finally got stopped (this went on for more than 5 minutes for sure), and I was taken by the guy who put me to sleep and two more nurses back to outpatient surgery. Boy, they were questioning me to make sure I was okay etc... but when they wheeled me back to outpatient we went RIGHT BY the doctor and he never said ONE WORD!!! To this day he has not apologized or nothing. I NEVER went back, but to see him for the biopsy results which were "negative" anyway. Even that last appointment he never said a word, gave an apology, nothing... but between my call to the hospital, and their calls to me, and reports sent on him to Medicare.. I filed a formal complaint with the Medical Board. My complaint was legit... in fact he went trial over it about mid October, and I know from another letter from the Medical Board, he is still even more under investigation and they are decided just how badly to punish him. The nurse really DID nothing "wrong" from what I was told.. she "opened" one of the sterol instruments in a way that did not "suit" him, so that is what the whole ordeal was about... I know this sounds like something from a horror movie, but this is the ENTIRE TRUTH! Talk about nuts! I was told my by Rheumatologist he used to be a doctor at the teaching hospital where my Rheumy is and they "got rid" of him due to his "temper". Okay after ALL OF THAT (sorry I got side tracked but I tell the story because PEOPLE need to know DOCTORS are not all SAINTS, and they don't know everything... go with your "GUT" feeling... if they don't suit you, find someone else.... So, I go to the only other eye specialist in TX that is close, and it takes like 3 months to get into see him. After all of this, he said it was my "Lupus" causing the double vision. He or "any" of them are sure why ( I STILL think I have a mild case of MS myself & my Rheumy basically agreed with me) so he prescribed an even different type of specialized "sphere" in my glasses so while I have them ON, I do not have double vision. But, without them on I STILL HAVE DOUBLE VISION!!!! Even through this, I went to 3 Neurologists and they could not really say if I have MS, or one seemed to think I have Myasthenia Gravis. Go figure! Which it is ALSO AN AUTOIMMUNE DISEASE! Okay after all of that rambling TIFFANY, definitely find you an Opthamologist that you feel good about. Go with your "gut" feelings about all of it I suggest. Not just the eye specialist, but now with the RA worsening, you may begin (I HOPE NOT) other symptoms... As you already know (OF COURSE) do your HOMEWORK! I know that sounds silly me telling you that. But I found out sometimes being the "patient" and going to a doctor, I don't see the whole thing "objectively" at times. So my husband usually goes so he can see from the "outside" of the picture, if you know what I mean... My heart goes out to you... my vision has worsened... and my glasses are wonderful BUT seeing double the rest of my like honestly SCARES ME! NOT ONE doctor... really could "diagnose" me... the nature of the "beast" of these Autoimmune Arthritic Illnesses... sometimes even the experts "don't know"... so I find I go in sometimes with MORE research, ask them about it, and pretty often, they will put me on a med I suggest, as stupid as that sounds. "We" as patients spend much more TIME than most doctors do "researching" every aspect of these illnesses... where doctors have to know so much more of a LOT of variety of illnesses, thus they sometimes are not even "aware" of the latest and greatest meds, research and so forth. They just don't have TIME enough to "research" each patients medical issues and symptoms as well as we can... that makes sense... with many patients, their time is limited about everything "new"... This AGAIN is where WE, the IFAA CAN AND WILL get these types of things RESOLVED!!! We can make the difference and we will.... all right I will stop my short "novel"... but I had to tell that... for you Tiffany, for all of us here, and for IFAA, I think those stories from those that are "inflicted" with these AAI can step up to resolve many things!!!


Wow! I know a small "novelette" when I post something like this!!! As I said above, this is why, WE MUST follow our GUT feelings when it comes to doctors, labs, tests, hospital care and so forth. They are all "humans"... of which we know we make mistakes. Many of those errors may not be "on purpose", BUT it still means OUR LIFE AND HEALTH in someone else's hands. So, anytime you are at a physician's office, whether it is for one of the AAI illnesses...OR the flu, ANYTHING, ask questions, if possible take a "observer" with you if possible. A caretaker, spouse (often they are both), a close friend, someone that can help look at the visit "objectively". When often go to the doctor, especially a new physician, and before we go, there is an entire list of things we want to ask. Well, I know for myself IF I DON"T make a LIST, a "physical" one, I will forget half or all I wanted to ask. It could be the doctor "answers" your questions before you have to ask. Yet, I find the opposite. Since they have lots of patients, getting "impatient" waiting, they all tend to me walking out of the exam room BEFORE they come in. There truly is NO excuse for it! BUSY yes most of them are busy, BUT as my own Rheumatologist has told me, they should NOT overbook patients and they do. You should NOT have to WAIT hours when you had an appointment set for months!!!! My PCP used to be so good about you arrived, checked in, sat a moment, and then they were calling you back. My PCP was in the room within 5 to 10 minutes at the very most. 
NOW, 4 years later; my appointment will be a follow up for 3 months in the future. I can almost guarantee, that I will be in the waiting area at the very minimum of 45 minutes. And even if I am called back to an exam room, it maybe 2 hours before he gets in!!!! I can understand if it is a "rush sick appointment". BUT when you have a SCHEDULED 3 MONTH AHEAD appointment, that is plain RUDE and inconsiderate!!! Many of these doctors now have posted in the waiting area, if YOU the PATIENT is LATE for over 15 minutes, they will "cancel" your appointment and reschedule!!! OR the one that really irks me, is that YOU WILL PAY 25.00 or MORE if you don't cancel at least 24 hours BEFORE your appointment! What about OUT TIME? WHY IS IT A "DOCTOR'S TIME" is more important than OURS? We have a life also, and are busy. Thus when we make an appointment way in advance we expect to not have to wait HOURS to be seen. Then by the time they walk in the door, they take a quick look at you barely, and then spurt out a few words, and as I said if I don't have that  YELLOW LIST in hand, mine will be out the door and gone. So, the LIST IS OUT as soon as I am in the exam room in plain sight! Now I totally get that they can't have patients constantly canceling appointments at the last moment, BUT there are "emergencies" that you may not know about until a few hours before that visit! Plus, why can't WE charge them? I've been there mor than once, and "he" has an "emergency" and he wants to change or reschedule, and that is okay. And what about paying us for spending often times HOURS for waiting on them??? Plus I have noticed now a nurse will come in and tell you the doctor maybe running late. But before I might sit there alone in that cold exam room for an hour and much more, and not one soul tell me what is going on!!! I've actually thought when it is a late appointment maybe they just left me there and closed up!!!! And I will say, NOT ALL PHYSICIANS are like this. I have several that are very prompt, and I may not wait anytime at all. But those few that do it to us need to have a course in "manners" especially "bedside manners". 

Okay, I've ranted and raved on this subject enough. I have about 10 irons in the fire now, and probably more that I have forgotten to write down! :) Blame it on the "foggy brain" as one of my friend's says. :)

More Exciting News & My Blog Posting Helping Elsewhere....

Excited to Blog Elsewhere for An Extremely Important Cause 

Even though I am working to get my "first post" up, since I have been accepted to be a "Blog leader" for IFAA's blog, "Systemically Connected", I wanted to tell all of you! I've been so thrilled about this, that I can't stand to wait any longer!!!! :):) After getting to "graduate" this week from IFAA's "class" to become an "Active Volunteer" for them, I just have to include that I will be posting on their blog from time to time also. When all is in place, I will also have my blog link up in their website, and I'll be listed in the "Systemically Connected" Blog Writers! :):) I am just so overwhelmed, and in a good way about all of it. As just about all of you know, my "advocacy" and helping others fight these autoimmune arthritic illnesses, as well as all of the AI illnesses is NUMBER 1 for me!! Thus my writing, getting a couple of books published, and now as I hope "possibly" to have book number 3!!! able to be published by the end of 2014!!!  (I am not promising anything, because you never know what is in store) but my plan is to try and have it written, and ready for publication late 2014 or early 2015.  That one is so very important because it will be my own journey through the lifestyle of those with chronic illness and chronic pain... and a bit more about my life's path... Anyway, I realize with "health" there are no guarantees... and I fear the Rituxan maybe wearing off sooner than expected. I am having the same pain I had before I had the infusions over the past week, so I pray it is just the weather being so nuts, and not the medication "stopping" to work before the 4 to 6 months it should last. ...more to come... I want to get my blog post on this up and then get busy on a couple more things for today!!!! 


By the way, both IFAA and Systemically Connected have link right on the front page on my blog here. You will see them down on the right hand side below my posts.....


Rhia

Your Shopping Online Can Mean An Easy Donation for IFAA! Happy Holidays!

If you are planning to shop on Amazon.com for your holiday gift list. Or if like myself, everything comes from Amazon, even my sofa!  Please consider using Amazon Smile ! With the click to purchase your shopping needs, Amazon will donate 5% to our Foundation. A simple and painless way to help so many that suffer from Autoimmune Arthritic Illnesses.

http://smile.amazon.com/ch/27-1214308



Your help is always so appreciated!


Use the link above and it will take you to Amazon Smile. :)

Just a Couple of Happenings in my World to catch you up on...

YEAH!!!!!! I FINALLY got to finish the project I need to finish!!! My computer crashed out at the very worst moments of my life... I was in the middle of a "graduation project" for becoming an Active Volunteer for IFAA! I was just in the beginnings of working on it, when whatever transformer blew down the street, that took my I-MAC with it! i finally got my new I-MAC in Wednesday, and as I said I think the FEDEX man deliberately waited to bring mine as the very last delivery of the day! He always comes by 3pm. It was like 5pm before he arrived... I thought maybe he crashed his truck or something.. then of course we had to get all of my stuff off of my back up drive and onto my new one. And then settings, mail, you name it, of course, it had to be done. Plus there are SO MANY new features, that I am loving already and more I have to even learn about. So, finally after some Friday, part of yesterday and most of this morning and part of the afternoon, I finished up my research and just emailed it to Tiffany, who was the Founder, and now one of the 4 co-founders of IFAA! I also think I may get to participate in some other activities with another big health advocacy organization! I'll know more this week. PLUS HUGE news!!! I've had a couple of days over the past week almost 500!!!!! people on my blog!!!! I am so thrilled! I am so happy I didn't give up. So, I know it is something that is meant for me to do. I am also going to be a "lead blogger" on another site (one of the Lead bloggers)... there are several... and when that is official I will also post that too.... I finally feel like the work of all the advocacy that I feel it what I am here for is finally coming together! Lots of patience, lots of just waiting until the right moment, the right people, and the right time comes along... I am absolutely exhausted, but I am absolutely thrilled about all of it. 

There are some great things happening and I am honored to share them with all of you. You are the ones that make me keep going. Even when I "see" only a couple of "fans" have been here on one day, those over 400 the next makeup for it! I appreciate every one of you, and my hopes are that each of you will give in a bit off yourself, and comment on some of my posts. It doesn't have to be long and drawn out, but a few quick words about your feelings will always be welcome! As this holiday weekend winds down, and we look ahead just a few weeks until the next BIG TWO are coming soon, I hope everyone is safe, happy, and well. We always hear "take care of yourself", or we catch ourselves saying it, but most of the time, WE think we know better; and for the most part we do know ourselves better, just sometimes we don't "listen" very well!  

I hope to be back on the right track since the new I-MAC has arrived, and we shall see what the surgeon has to say about these darned hernia's tomorrow morning... I'll keep you posted...

Rhia