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

Have A "Game" Plan?!! IFAA Does! Rocking Autoimmune Illinesses Right Out of the Stadium!!!!

IFAA ready to kick Autoimmune Arthritic Illnesses right out of the door!

International Foundation For Autoimmune Arthritis - Standing On Your Side of the Field!

This is one of the most incredible non-profits I've ever seen! Although "small" right now, they can just about outdo any of your larger non-profits in the way they gets things going! Another HUGE plus, EVERYONE in the entire non-profit HAS ONE OF THESE AUTOIMMUNE ARTHRITIC ILLNESS OR MORE! So as you ask yourself about things such as earlier detection, earlier doctors, labs, tests, medications and even almost more than that, EARLY EDUCATION AND COMMUNICATION can and will lead to an earlier remission, or even possible a chance of not even having anyone to deal with these illnesses again!!! From their "showing" at the White House, making a huge impact on Congress, to being able to have the ability to find other ways they can change the face of AAI's forever, this group refuses to take "no" for an answer! Please visit the link above and see just how the IFAA has already changed and will continue to change many lives!

From My Home to Yours...

http://www.123greetings.com/events/thanksgiving/wishes/let_us_be_thankful.html


I hope this comes up ;)

Thankful... Grateful... Blessed... A Holiday for Reflection...

What Will You Reflect Upon this Holiday Season...

Well, as superficial as this is to be a morning to be thankful for so much. Right now I am very thankful my new I MAC came in yesterday afternoon very late may I say.  LOL! I sat here on pins and needles all day long, listening for the FEDEX truck. Of course I must have been the very last stop on his delivery schedule. It was almost 4pm before I finally heard that truck from down the street! I had hoped all day long that my computer was not sitting in a broken down truck, or got left in Hutchins accidentally at the hub and so forth. Well, my fears were squelched because it arrived safe and sound. Gosh, thankful?! I am thankful for so many things in my life. My husband, my family, friends, as horrible as my health seems at times, I am still up right walking, and bless people's heart I still can speak, some probably think too much!  I am much like most of us. It is purest "human nature" to fuss, gripe, whine, moan and groan. Whether it is about family, spouses, kids, finances, jobs, bills, health and healthcare for sure, and the list is endless of things that tend to grate our nerves. But, today is one day to reflect upon the many, many blessings we have in health, family, homes, kids, and in life. As I said a moment ago in a post, it is a cliche' to say, "It could be so much worse". Well, yes, in our heart's, even though there are days our minds don't quite follow, we know it could be a great deal worse. As we open our newspapers, or look at our favorite news reader; perhaps listen to the "nightly news", all around us is much, much worse. Some of it almost too terrible to even speak of. We have seen it so much, heard it so much, talked about it so much, from politics, to foreign nations, from job loss, to the horror in our nation from human willing to hurt others like themselves, that we truly have become complacent to it. Or, I don't think so much as we've become "complacent", for myself I just almost don't want to "stomach" more of the same. There seems to be very little to no "good news". We don't hear about the puppy saved down the street, or how a town completely rebuilt itself after a flood, fire or some horrific incident. Oh, we hear about the horrific incident all right. In fact to me that is the main problem ALL we HEAR and SEE are the "bad" things happening around the globe. I've questioned that numerous times, whatever happened to "good" news? My husband answers because "good" news doesn't sell. For the most part, people want the "blood, guts, and horror". Take a look at all of our movies, our television shows, the games that our kids and that some of us as grown ups play on our latest video's boxes. Is there much good anymore? What happened to "Pac Man or Woman"? What happened to "Mario"? What happened to "Pretty Woman", or "City of Angels"? Look around and yes there is violence, horror, man kind against their own, floods, droughts, fires, loss... a great sense of loss... and no one knows more about loss that each and every family with military folks. Those people know loss. Even though they may not physically have someone they "lose" as far as that route of eternity. Yet, they suffer "loss" from all sense of direction, when they come home from what they have had to endure, see, hear and do. So, as you spend time today with family, with friends, with just your spouse, or possibly maybe just yourself... let's try to reflect upon all of the true goodness we do have. Even though it "could" go away tomorrow, try in the next days ahead to "hold onto" those good thoughts. The world CAN be a better place. Just look around, and you might just see something good right at your own door step. Happy Thanksgiving, and I am very Happy to have my family, and my "online" family! Be blessed, Be safe, and please ..... Don't get too sick on all of the fantastic food!  Rhia                                                                                                           

Thanks for, A Few Thoughts, & To Your and Yours....

I'm just "stringing" a couple of posts together from FB right now. As you shall see below fingers crossed my new computer is coming today. But, as you know that is an ALL DAY affair setting it up, getting my desk back in order, transferring my files onto it from the external drive and hoping I have not lost anything.... So, I shall post a couple of things I wrote in FB the past two days, and in the morning I hope to be ready to "shine" and "scream"... well my computer to "scream" with speed, LOL, not me!!!!

So here are the posts, and I wish you a wondrous holiday... be safe and hopefully as I said in one of these "flare and as pain-free" as possible... Rhia


I just thought of one thing that I was reminded of with it being Thanksgiving Week! Some of us will be with family, friends, some home with our pets. Some of us will be right here with out online friends and family. I am Thankful for the fact that I am so far NOT lying in the hospital as I was when I was 15. I spend 7 days during Thanksgiving holidays in High School having my right knee completely cut open and the meniscus taken out. I was in traction with my leg in a huge heavy cast that was from my bed as far as it could come up in my leg to my toes. I was in that thing 3 MONTHS! Then spend a very long time getting my muscles back to where they did not look like toothpicks. So, that day, my Dad, bless his soul, came to Dallas, and forgo his turkey dinner with Mom and all the family so I wouldn't be alone while I ate mine from that hospital bed. Right now as that memory floods over me, that was THE BEST Thanksgiving of my life! And right now I miss my Dad more than anyone could ever know. He would be 91 if he were still here with us.... May all of you find that one thing you are so Thankful for.... Be Blessed, Be Safe, and Know you are LOVED! 

I've had a couple of really BUMMED days! My computer that was supposed to be here yesterday didn't make it. FEDX had not updated anything on their site until later yesterday evening. So, all day I had no clue even where it was in the delivery. It left Sacramento on Friday, and after that all it said was it was to be delivered on the 26th. I am already SO aggravated with this old laptop. I just can't do much of anything on it. It is SO SLOW, it is worse that "dial up" days I think! So, that had really thrown my schedule off. I wanted to get Thanksgiving "Cards" online out, but I have all of my cards for Xmas to make out. Plus I have NOT even BEGAN my annual Christmas Letter. I have been sending a letter in with out Xmas cards now for years. I made it a tradition a long time ago. I don't believe I've missed very many.  But I don't really even have any "software" on this old thing to do it on. We wiped this drive fairly clean and began using this computer for our music. We had Garage Band on it, and did our clips, and all of our recording and so forth on here. Then Jim can bring it in and send it to his computer where he can actually put it all together for a song. So, things like "pages"(which is like Word) and so on have been off of here for a long time. And the music files have made it very slow, but we don't want to lose any of those. Thus, we cleaned everything off we could, and set this one up temporarily for me until mine can get here. FINALLY fairly late in the evening, yesterday, FEDEX, updated their website. My computer is in HUTCHINS!!!! (YEAH!!!) So, that means it is just down the "street" from me well almost, but it has arrived at the local hub and should be out for delivery TODAY!!!! Thank Goodness! I got up yesterday and was just not about to sit at this thing and be able to not do a thing productive! So, I made my "annual" fruitcake, did some cleaning, and watched some Xmas movies last night with my two puppies... Now if the computer gets here today, then that means all day getting it set up, my desk back in order and things have way back to whatever normal is around here. My thoughts and prayers are with ALL of YOU! 
 Please be safe! I realize many may be traveling or have family traveling and weather is very bad in many places around the nation. Enjoy family and friends, have a very warm, loving and hopefully flare and pain free as much as possible holiday! And Eat a little bit of everything!!!!! We are taking Mom over to Waxahachie tomorrow to a huge buffet over there for dinner (more like brunch).  So we don't have far to travel and right now our weather as far as traveling right here is good. May all of you be blessed and overflowing with all of the things we should be thankful of. Later in the day, whenever FEDEX delivers my new computer, (I think I am still in shock) LOL!!! I'll probably be away for a bit while we set it up. But I will be "screaming" with speed when the new one is here and ready!!! WOOOOHOOOO!! I can finally catch up hopefully! 

"Hectic Home" for the AAI Holidays???!!!

"Hectic Holidays For All of Us in a Foggy Brain Haze!"

ONE HECK OF A TYPICAL MONDAY MORNING! 50 plus things to do and I don't know where to begin first! With this being a holiday weekend, which for us as far as the "day" itself, is not all that much trouble. We are taking Mom and going over to Waxahachie to eat at the buffet there at Ryans'... and more than likely we are headed to Winstar for XMAS!!!! I have a new coupons for 2 nights if we wanted to stay in their NEWEST 500 room HOTEL!! I hear it is fabulous! ;) Of course that is a while away. That will depend on weather how all of us feel etc. If we do we can't go but 1 night. I would not leave my dogs but for one night alone. They already have separation anxiety if just one of us leaves for an hour. So one night with us gone is about all they can handle. Even at that it is gotten to where we have to keep them only in our kitchen. We started having issues about a year ago with them peeing where they are not supposed to. Both of both have been house broken for years and years. But, something went on with them a while ago, that every once in a while for no reason one of them will pee in the floor, like behind our sofa etc. I have tried everything, but they get better. Like now this past few weeks has been so much better. But sometimes they will start it and do that for weeks, and then they seem to stop again. So we just don't just in leaving them if we are both gone for an entire day or so with the run of the house anymore. We did for a very long time, until this issue came along. IN fact they have gotten a bit older and I hate going off even over night without one os us here. But, they are always very safe and my kitchen area is huge! So, they are not just crammed in a tiny spot. They have lots of room in my kitchen. Anyway, enough of my moaning and groaning... then either I am having a flare start, or I am just too stressed. I am just on overwhelm.. and I know all of us are. The holidays are an incredibly stressful time for everyone! Then when you are chronically ill, with Autoimmune Arthritic  illnesses such as RA, Lupus, Sjogren's, plus the other hundreds of these diseases & that includes those with chronic pain on top of the entire ordeal,  it puts our "stress" into a whole new category!!!  Then add on how your entire "schedule" gets all turned upside down. For instance, I have a "set" time everyday that I take my medications and eat something for "breakfast". Well that is after the 1ST ONE with all of the pills, as my husband says. Then I also have a set time or day of the week that I clean, mop, sweep, even water my plants, and so forth. Well, this past couple of weeks from all of the "added and unexpected stuff" as in weather change so dramatically, Mom and a medication issue, my computer crapping out on me, Jim and his shoulder still not well, I am not feeling ll that well myself, and the list of "extra and unexpected" just just hindering the "regular" one. Then I had gotten blown out of the water with the holidays so quickly upon us! I haven't written my annual "Christmas Letter", there is fudge to make;  fruitcake that needs to be made early so it takes up all of the flavors. That doesn't include the other one of many things I am just now thinking of, which is we usually make "goodies" that we either put in a basket or a decorative tin. WE take those on Christmas Eve to our close neighbors (about 6 homes) and have made that one of our traditions for Christmas! Then I JUST remembered (another THING forgotten due to my COMPUTER crapping out) is our ANNUAL Sleigh Bell by Wallace we order every year. Since the first Christmas we were together we started buying these sliver and gold sleigh bells made by Wallace Silversmith's. In fact last yesterday we "celebrated" 10 YEARS of them! In fact they added a little note inside the one last year about they saw the we had ordered from them every year.  Actually a store in Kent WA that we found the first Xmas called Silver Superstore. That year it was so late and almost Christmas by the time we found them, that we got the very last one they had for that year. So, now they email me about 2 months ahead of time as a reminder. Well, until a moment ago, I had forgotten that I had not ordered it yet. Som I just told Jim while we were standing on the front porch I needed to come in and order it before they rub out. Low and Behold in my inbox, there was a reminder for me so I would not forget to order it!!! Now call that "ESP" or not... anyway I sure as hack just ordered it! :) If we do NOTHING else we made a promise that we would ALWAYS get our Sleigh Bell no matter what. :)

So, as I make out my TO DO LISTS, and the LISTS to "remind" me about my lists... and that list to make sure I don't forget about all of the other lists... I realize that in "reality" I am going to have to take one breath at a time, do ONE thing at a time, and also "step" into these moments to know there is no way I can do it all. Either I need to "cut" some things down smaller, or less, possibly try to NOT do some things, and then NOT feel "guilty" because I could not do it all.

As much as I sure as heck (like EACH of you) want to think I am "super human" especially with all of my "bionic" parts, one would think I was Super Human... I am admit I'm not... no longer can I do it all, be it all, make EVERYONE happy all the time, and be able to go on and not stop to find out I am just worn to nothing and come into a huge flare. Which I fear I am having now. Between sudden cracks in the corners of my mouth, my throat soar, and feeling just out of it... I feel as if I am definitely 'flaring" .
So I remind YOU! PLEASE TAKE CARE OF YOU FIRST!!!! I know, I know, we hear it constantly... but if we don't we honestly not of help to anyone if we make ourselves ill. So, some times as difficult as it is to say NO... that two letter word needs to be a GRAND word in our vocabulary.


I close for now in saying, that we are super at all the things we DO get done! We are NOT a disappointment if we aren't able to do it all.

Living Life In An AutoImmune Illness "Zone"....

Life as we have lived it... and now Life as WE that deal with AutoImmune illnesses Live it Differently  - Yet Happily!

As some of you know, I live in TX, just below the Dallas area. WE are having our first blast of very COLD weather today and over the next few days. We are now under a Winter Storm Advisory, with possibly sleet, ice, and some snow. Usually we get more ice than the fun stuff, snow. As I was talking about on FB, how I can "predict" the weather almost better than the forecasters can, the memories came pouring back to me of when I was able to go snow skiing. For years, before I had all of the illnesses happen, we went snow skiing, every year the week of my birthday. It was our annual vacation, that I saved up for as soon as I got home from the one we were on. I put money back in a "Christmas savings" fund every week for the entire year. Part we used for Santa and Christmas and the other was for our trip. Those are still some incredible memories for me. That was a time when I was on those skis, I felt completely "FREE". All of the snow and the forests, and just a quiet feeling of peace always came over me as I started down the mountain. Don't get me wrong... I took some hellacious spills. We always made videos so we could laugh about each other and our "Oh Crap" falls. You knew when one of us was going to take a very funny fall, because "Oh Crap" was all you heard! ;) Anyway, below is the post from Face Book that I wanted to share with everyone here. 

This may not sound like a "post" about autoimmune arthritic illnesses, yet it has all to do with then for me. Now I can no longer snow ski. In fact there are many things that have been crossed off my list, because I no longer do them. Mowing my lawn, and tilling the garden. Going to the lake and being in the sun. Making plans like a trip for something to do months away. I never know even a week before something is planned if I am going to be able to go or not. There are times I feel so bad that I cancel doctors appointments. I am just too fatigued to go, especially if the appointment are in Dallas. 

This comes to the place of why I can't do things any longer. It is certainly not age. There are MANY people I saw on those slopes as Wolf Creek Pass that were in their 70's. I am sure some of them lived close, so they have much more practice. But it is just the point "age" does not necessarily cause someone to stop doing things they enjoy doing. As you are reading this, I am sure you are thinking back to the times that are special to you also. Vacations, visiting family or friends, gardening, riding a bike, just a number of things that so many love to do, and do it. Age is not the factor at all. 

But, having an illness that can even strike when you are very young, in your teens, can stop you from doing many things that you loved to do, or would love to do. Is it a difficult thing to handle? You bet it is. I know I speak for not just myself but ALL of us with an Autoimmune Arthritic Illness, or any type of Autoimmune illness and/or Chronic Pain/Chronic Illnesses such as FM and CFS that also take away so many things in life that either we once took for granted; or at least never gave a thought that we would not be able to do them "the next time". Yet, it can strike anyone. Even though "women" are probably 80 more times or more to come down with one of these illnesses, men are also victims of these diseases. So, they do not discriminate when it comes to gender, age, or race. I have read articles and I am sure to do those studies that African-American people are more prone to these illnesses such as Lupus than other genders. I am sure researchers have been studying that one a great deal to find out why a nationality would make a difference. Also, why so many more women are much more likely to get the disease than men. 

My point to this is one, I did have some great memories flow through my mind when it comes to snowy weather. I also have these "blasting" memories of how much these horrid diseases take away from our lives. From changing relationships, families, jobs, and everything about your life basically, all of us can't help but be angry at times about it. Even though like myself, we come to accept it for the most part, I still feel at times like a piece of me has died... has left me... and changed me forevermore.

WE do learn to deal with it. I have in most ways. You find ways to compensate for what an autoimmune illness takes away. You learn new hobbies, or a different way to do them. You discover another way in a relationship to be close, and educate your spouse, and your family so they will truly understand the "why" of the things you can't do. 

As I often talk about my life, a flowing river, where there are bends, turns, white rushing waters, and then the bridges I flow under. The climb to the top of life's mountain. I scratch, crawl, and inch my way up, and sometimes I slide back down, as the rocks and stones may scar me, I still look up and know that is where I am supposed to be. 

For the rest of the year, and into the next year, I hope each of you who suffer and are inflicted with these still misunderstood life altering illnesses, such as RA, :Lupus, Sjogren's, MS, Still's disease, MCTD, UCTD, JA, pernicious anemia and the 100 other AI diseases out there, can look UP and reach up to see that you also can stand atop your own "life"s mountain".... and reach up to the stars... and feel whole again... even if that means you must "change" how you enjoy life in a new way!!!!


This below is a Face Book post from this morning... I wanted to say it also along with the above writing.... 

 I imagine you are probably getting it up there worse than we are. they have changed the forecast so many times the past week, I was not sure what it was going to do.  But my "bones" always let me know... My thumbs and fingers have been extremely bad this past week or so. Not just pain... now it is more of them not wanting to bend, I have like almost "zero" flexibility. I can't hold onto things That has been going on for a while now. That is partially why I suspected MS along with all of the other ailments. I have just lost so much grip and strength in my hands, arms, fingers, and I notice it lately even in my legs. IF I am up for a long while at the house doing things, or I go to "Wally World" and walk for a long while in there, my legs feel like "rubber bands" of jello ... I feel as if I am going to just collapse. I guess partially illnesses, partially all of the surgeries, and then I guess I have to account for getter older!!! Even though that is NT one I really want to ADMIT!  Kind of like my memory... if I forget, or can't remember, I blame it on the brain fog...  better than saying maybe I have dementia... You stay warm up there and out of this weather... and of course avoid all of the "no driving fools" that try to drive in ice. No way most Texans from in this part can drive on ice. HAHAH Many of them can't drive on dry pavement, much less wet or icy!!! Speaking about "black ice" on the roads. One year we were coming home from snow skiing in Pagosa Springs, CO... at Wolf Creek Pass (some great memories of snow skiing for me)... we left Santa Fe... and already knew it was a possibility the roads could be bad. We got to the main highway from Santa Fe (I-40) to head to Amarillo state and all of a sudden we felt the van just slip a little... it was a solid sheet of thin ice on the roads and of course you can't see it. Anyway, we slowed down to a crawl. In fact we happened to have borrowed a friends van so we sure as heck did not want to be in a wreck, much less a friend's vehicle.. suddenly here comes an 18 wheeler SIDEWAYS beside us just flying past. He jackknifed it into the medium and then here comes several cars, and they were not expecting it. Each one that went around us were in the ditch when we got up ahead. In fact, we drove on to Amarillo, but it took us something like 12 HOURS to get there. We called 911 and reported the accidents, but the entire way there were cars and 18-wheeler in the ditches. It was nuts. Believe me I felt that the Lord was helping to drive that van for sure.