Autoimmune Arthritic Illnesses - Finding it not "Easy" ... To Be... Me.

An Autoimmune Space - Is it every Easy - to Be - "Your" own Me?

I heard this song last night on a movie we were watching... Oddly enough I found that David Grey's songs really hit home with me, when I was brand new in a huge city. I had never lived anywhere but a small town, & huge cities were something I "visited" to go shopping, to doctors and so forth. I got "introduced" to this man's music just after moving there, when my entire world had been completely transformed. I had gotten on a bus and road for almost 3 straight days and nights, to a job that I had never done, in the middle of Seattle that I knew nothing about, would have to "learn" how to go back and forth from Seattle to the islands around such as Bainbridge, drive in a city that had almost "mountains" in places in the main streets & to where every single thing in my whole life was going to be in the "background". I shall be "reborn" in a manner, you could call it. I was doing a job I never had done before, which was being an assistant manager at one of the apartment buildings in the "creative & quirky" part of Seattle known as Capitol Hill. Even the way of speaking was different there. Words we frequently used in Texas were not said much in Seattle. For instance, the "grocery store" as we called it most of the time in Texas, was the "market" in Seattle. Dinner was used, not "supper".  I slowly "self-learned" to try and "lose" my "Texas dialect" and try to sounds more like a I was "home grown" in Seattle. Of course you can take the girl out of TX, BUT you can never take the Texas Accent out of the girl! Just about everywhere I went the first question was after I said "Hello" was where are you from? I got asked if I were from "GA, MS, NC & several others that people tend to associate with a "southern accent". Yet, even though Texas is considered southern, they have their own unique accent. In fact we sound like a bunch of hicks from the hills. I couldn't completely take away the inflection from my born and bred accent, but what I could do is sound "less" like a southern dummy, and more educated. By the way, the FIRST thing just about every person, man or woman, said to me after I opened my mouth and they heard me speak was "Oh, that is so charming"! Man I almost hated to hear someone say that after while. I did NOT want to sound "charming". To me that just indicated I still sounded like some South Southern woman, who was about as dumb as a brick, drinking iced tea with a sprig of mint in it, wearing some frilly, flowery dress & ordering her many "staff" around all day long. Thus charming did not set well with me... LOL...

Of course being in Seattle for 5 years did "rub off" on me. I began to use "their" colloquialisms. In fact, I brought some of those back withe me to Texas. I never "wash clothes", I do laundry. I never to go the grocery store, I go to the market, the ending meal of the day is not Supper, it is Dinner. By the way I did learn another tidbit of information on "West" coast speaking from a dear friend in Lancaster CA.  One day I was talking about their local sheriff's department staff and I called them the "county boys". She about fell over laughing as she asked me to say that again. Never had she heard the term for the County Sheriff's Officers, called the County Boys. Another one she had not heard, and I noticed it in Seattle also. A "toliet" on this side of the USA is known as a toliet. In Texas it is also a commode. Along with several other "slang" terms. The "pot" is one my Mom says all the time. I think I've rubbed off on her a bit though. I notice now she may say restroom, rather than the pot etc. And when you went to “do laundry” on the western part of the country, in the south you were “washing clothes”. Now the funny thing about that one is due to my Texas accent, it sounds more like “warshing clothes, rather than washing. So of course that just made her laugh more. In fact, I have so many little “sayings” “comparisons”, things my Dad would say, and you hear from on television now or in a place that is quite southern in nature, or Texan, you will hear a few of the sayings my Dad said so often they just rubbed off on me. For instance if you are chronically late for an appointment, Dad would say “He would be late for his own funeral”. Let’s say some one happened to be a bit uneducated, or just say something “off” that may sound a bit stupid, he might say “He couldn’t pour “pee”, with instructions on the heel, or if someone may be a bit frugal with their money, then you might hear, “He is so tight he has to screw his britches on in the morning”. LOL!!!! Believe me, I could write an entire book, on just the sayings I heard all my life, and many of them come straight out of my mouth quite frequently. My husband told me I had so many of these “sayings” that came from my years of growing up with my Dad, and here in Texas, that I should write an entire book on them. I probably do have plenty for a short book honestly. When I sit here and begin to think about them, I can recall hundred’s if I made my mind up to get them all written down. 

The point of all of these things that I am talking about is to find out, even though all of us speak “English” and I guess technically, “American English”. Yet, if you traveled through most of the 50 states, you would find there are all types of sayings, dialects, or colloquialisms in just about every state. I also found out that in some states, they really do not have a quirking type of accent, such as someone from the Southern states, and so forth. They barely have an accent at all. Seattle was that way. There really was not any “accent” or particular dialect. That was what made them different, rather than having a great deal of inflection in their speech.

Onto, the beginning of all of this. Being an absolute music lover, of almost all types of music except Opera, I listened to music almost 24/7/365 when I could. I had probably heard a “David Gray” song in TX a time or two, but I never knew who he was. So, some of the people in the Seattle area really loved his music. Thus, I was introduced to his particular style and sound, of lyrics and music & I just loved it. His lyrics “spoke” to me, especially about how I had came through such a horrendous journey, allowing lots of water to flow under my own bridges, as I burned some, mended others, and built some new and stronger ones.  Another one of my favorite songs, and it is the chorus that I truly love is

(There’s so much time to make up, everywhere you turn, time we have wasted on the way, so much water moving underneath the bridge, let the waters come and carry you away.) Crosby, Stills, and Nash….

Then I hear these lyrics by David Grey, along with many of his songs, and lyrics. When I heard this one in particular, it summed up for me, all that at that time in space for me, I felt the same as the song says, “It’s not easy to be…. me”.

(Lyrics by David Gray - It’s not Easy To Be Me.

"I can’t stand to fly

I’m not that naive

I’m just out to find

The better part of me 

I’m more than a bird…I’m more than a plane

More than some pretty face beside a train

It’s not easy to be me

I wish that I could cry

Fall upon my knees

Find a way to lie

'bout a home I’ll never see 

It may sound absurd…but don’t be naive

Even Heroes have the right to bleed

I may be disturbed…but won’t you concede

Even Heroes have the right to dream

It’s not easy to be me 

Up, up and away…away from me

Well it’s all right…You can all sleep sound tonight

I’m not crazy…or anything… 

I can’t stand to fly

I’m not that naive

Men weren’t meant to ride

With clouds between their knees 

I’m only a man in a silly red sheet

Digging for kryptonite on this one way street

Only a man in a funny red sheet

Looking for special things inside of me 

inside of me ...... inside of me ...(x2)

I’m only a man in a funny red sheet

I’m only a man looking for a dream

I’m only a man in a funny red sheet

It’s not easy ... wu.. hoo.. hoo..

___________________________________________________

I don’t mean this in a haughty, self-righteous way. I meant it in a way, that everyone expected me to be this “Super Human”, with the answers to it all. It seemed I was expected to be “perfect”, yet I was just a woman, and women have to bleed, and I was truly looking for a dream. Part of that dream coming true was found by me in Seattle. 

Every once in a while my Mom and I are talking, and some subject comes up about me and living in Seattle for so long. Honestly, if circumstances wee different, I am almost positive I would still be in Seattle. Where you did not need screens on your windows, no bugs and flies were. For the most part your windows could be open much of the year. Many places had no air conditioning, because you didn’t need it. The seasons there are so mild, Summer is rarely very hot, the Winters are somewhat cold, and you do need heat, much of which was baseboard heating, that I had never seen. Or many of the older apartments in down town still had the old fashioned, boiler type heaters. The ones that are usually sitting in rooms, all iron and they go in loops. A boiler keeps the water hot, and it flows through pipes up to these iron steam type heaters. I had never experienced anywhere that did not require screen on windows or A/C units. 

Mom sometimes brings up really silly questions that I’ve answered 20 plus times about my being there for those years. I healed in Seattle. I did NOT WANT to “come home” to Texas. When that bus hit the road from Ennis, and I got to the Dallas bus hub, and hopped on the one that would take me to Washington State, I never looked back. The healing of my heart, emotions, mind, and my body at that time began. I felt alive, and as if the weight of the world was lifted off my shoulders. As those years began to slowly heal me there, the last thing I wanted to do, is come back to the very place, that caused me so much grief. Sometimes it is difficult for other people, especially those closest to you to understand ideas about loved ones because they are too close to the situation. There is no way to look at something “objectively” if you have your own heart and spirit. 

The “waters” that carried me under those bridges, came full circle and brought me back to where I began the journey. Yet, this time I was much different than when I left. I had put my own self back together again. I did it by myself. I didn’t have anyone to “tell” me or express to me what “they” that I should do. I did exactly as I wanted to do. So, when I entered my “home town” after 5 plus years, I was very different. In a good way. I’m not sure my two kids and Mom, may not have seen it, but I knew it. That was what counted. One thing that I didn’t realize was that I had not fully grieved the loss of my Dad, earlier that year. I thought I had. I felt angry, bitter, mad, sad, and so many more emotions that I was not expecting to be here to slap me in right in the face and hit me in the gut so hard. 

After once again delivering a small novelette to my readers, I am sure some of you maybe wondering “does this have one thing to do with Autoimmune Arthritic Illnesses”?

To answer that question is “YES! Absolutely!” Although I had shown many “symptoms” of Autoimmune Arthritic Illnesses, for many years of my life, even when I came back to Texas, 2005, I had not been given a diagnosis of any type of autoimmune illness. I had heart Degenerative Disc and Joint Disease. I had heard that my joints were just “Falling apart”. I had 2 Arthroscopic knee surgeries in 2007, one on my right shoulder, my left wrist repaired, and was in chronically severe pain every day of my life. I was exhausted all the time, my brain seemed not to function, I began to “feel” sick frequently. Then came the “pain pump” surgery to put in internally. There has only been 1 doctor back in Seattle to mention he felt I needed to see a Rheumatologist. He was sitting that appointment up, but we moved from WA state a few weeks before the appointment. So, I am not quite sure what brought the entire symptom/subject around to my PCP and I. I believe it was just a mixture of symptoms, and possibly my own research over these same symptoms, pain, fatigue, my joints being so fragile, my fingers slightly bent, and so forth. So, between his thoughts on it, and my thoughts on what I had read, he ordered about 28 tubes of blood to send off to do the ANA and every other possible test for any type of autoimmune disease. It took them a couple of hours to even get all of that blood out of me. My veins roll, and are thin. So believe me when I say it took several sticks, and several lab techs to get enough blood in those many, many tubes. 

A week or more later, I got a call from his nurse saying he had the labs back and he wanted to discuss the results. Of course I knew something mush have shown up, or he would have just had her tell me all of the labs were normal. I “hoped” as horrible is this sounds, they all of those lab tests showed SOMETHING WRONG with me! Sure enough my ANA levels, inflammation blood labs were off, along with several issues the lead to him thinking first of all I had Lupus, along with Osteoarthritis. He immediately sent me to a Rheumatologist who was very intelligent. He was elderly, and probably needed to retire, but he still knew what was important as far as labs, and as he examined me, along with asking all the questions he needed answers on, he felt it “maybe” Lupus/RA, BUT due to the wide variety of symptoms that he seen, he first diagnosed with Mixed Connective Tissue Disorder. I did not know a great deal about this particular chronic illness honestly. I first thought maybe it was another one of those “trash can” diagnosis, used when doctors can’t put an exact finger on a real diagnosis. He had told me on the very first visit, after doing X-rays of my feet/toes and hand/fingers, that I showed quite a bit of damage in my toes, fingers and especially my thumbs. He also told me I had Raynauds. He mentioned that I suffered from “hyper-flexing” of my joints. We call some people “double jointed” when they seem to be so limber, but this meant my joints tended to bend backward rather than just straighten out when I was walking and so forth. In other words rather than my knees “stopping” in their proper position when I took a step, it was like my knee would continue to push out further, thus many of my joints did the same. It was also another symptom, of all of the autoimmune disorders that were to come. I went to him for about nine months. He did a great job with extensive blood work, and examining me with each visit. He also had the greatest bed side manner, plus he had to be pushing 75 or 80 possibly years old. Yet he would remember each and every detail about the patient and if a spouse came, the spouse also. He called Jim by his name every visit. He would ask him questions, and have Jim involved in the entire visit. He also rarely looked at my chart. When he came into that examination room, he had everything in mind. He has to have the the best memory I’ve ever seen. Once all of the blood work, X-rays and so on were complete, and he still decided he was not quite sure about the Lupus/RA yet, he put me on Plaquenil. The only ONE thing that both my husband and I really was disappointed with him was, that he did NOT believe in “aggressive” therapy. In fact he even showed on paperwork to still be doing “gold injections”. Which as far as I know have been not done in many years. He also was truly not versed on the newer medications, such as the biologics, that were really coming out strongly about that time. 

So, I began the hunt for a new Rheumatologist. That turned out to be a nightmare! Little did I know many of the “Rheumys” out there, specialize, in one way or the other. I met one that believed ONLY in labs. She was not going to budge on any medications, and she did not care how badly the pain was, stiffness was, and honestly almost took me off of what medications I was already on. At that time I was still on the Plaquenil, plus my regular MD had put me on Methotrexate by then. I went to about 3 visits, and ran. I went to another one that sounded promising. He was more of a “research” and clinical trial for Lupus Rheumy. I ran into one that supposedly was one of the top Rheumatologists in Dallas. It was this huge, fancy, entire group of doctors who had 3 floors in a office building in Dallas. It did not take me but around 20 seconds and I ran. He did not agree with anything any of the other physicians had said. He frankly told me he thought I was just another one of those with “Fibromyalgia”, and that UNLESS my blood work was extremely abnormal, I really was mostly wasting his time and mine. I guess he was a nonbeliever in sero-negative  Rheumatoid Arthritis. Besides, he was just another “click” up the ladder to the researchers, clinical trials bunch (don’t get me wrong I am all for clinical trials) but there was just something about him and another one I saw that gave me the creeps. I’ve never looked it up, but I know in some form or fashion, these physicians that do participate in clinical trials must get compensated for it. After I seen and heard what I did, I figure they must get a pretty heavy load of compensation in one way or the other for participating in them. 

FINALLY due to a dear friend, who in fact I met on Facebook, led me to the very BEST, venturing to say Rheumatologist in TX for sure. I bet he would rank very high up on the scales in the entire nation! He is an “aggressive” thinker. He also LIKES the fact patients educate themselves, research their symptoms, medications and illnesses. He appreciates those who help him, by helping themselves. In several occasions, I’ve went in to see him with a note about a different medication, or if we can try this, that or the other. And unless he has some really specific reason for NOT using it on me, which it fully explains his reasoning, “we (him and I) have followed some of the things I suggested. As I always say, I am NOT an expert, not a doctor, etc…. but when it comes to MY OWN BODY, I am ranking very high on the expert level of what I feel will help or not help me. Most of us are “experts” when it comes to our own bodies, illnesses, medications, and so on.

Now, to the final “summary” of why all of this long, drawn out detailed story comes about, after me hearing a song that is so “special” to me is, I found my very first deep understanding of myself, and my own life, that 5 years in Seattle. At times is was not a grand picnic. I was lonely some, there was no one there to help me with anything. In fact my car gave me some issues, just before I was leaving on a vacation, and I had to trust my instincts, along with trust people I had been working with, on a mechanic. So, as incredibly much of strength, determination, self-worth, feeling I was capable of taking care of me and all of those good things that so changed in me was only the first leg of that journey.

Alas, what transpired in Seattle to change me, and make me stronger, wiser, and more determined also helped me to be right here, right now, facing each and every hurdle that comes my (our) way.

Coming back “home”, facing the loss of my Dad, and finally facing my own extremely potentially “serious” and could be down right deadly diseases, 8 plus surgeries within 2 years, and all of the other million things here, I WAS able to first of all, be me. I found “me” in Seattle. And “she” came back with “me”. So, “no I can’t stand and fly, and I’m not that naive, I’m just out to find”, “the better part of me” - Even “super people” truly bleed, I’m more than a plane and more than some pretty face aboard a train… yet It’s Not Easy To Be…Me….

p.s. It’s not easy…. for anyone of us dealing with autoimmune illnesses, which rule our very existence so much… to be YOUR own “me”. 

A Beautiful Bracelet & The Lady Behind the Incredible International Autoimmune Arthritis Foundation

How ONE Person Can Take something out of "nothing" and turn it into An Amazing Foundation For those Suffering from Autoimmune Arthritic Illnesses.

... everyone--- this bracelet signifies so VERY much to those of all who suffer from the infliction of autoimmune arthritic diseases... And this dear woman that makes them by hand each one has brought so much HOPE to so many people AROUND THE GLOBE!!! I am absolutely so proud to tell everyone that I am an "Active Volunteer" for the IFAA!!! And I could not ask for more.... Rhia I will also get this posted on my blog.

I wanted to match the "reasoning" behind the bracelet and what it stand for. First of all Ifaa Tiffany Westrich-Robertson makes each and every one of them by hand. this is the way she made the very first one, thus the "Buckle Me Up Movement" began. She still continues to make them special order by hand. So, If you are wondering "why the beads" and what this stand for in it's entirety here goes. "The 3 silver beads and 3 black beads represent all people working together to make a difference. Red is the color of strength and signifies the strength we all achieve in numbers. The final silver bead symbolizes moving forward to find more and more people to join the movement to raise a global awareness about Autoimmune Arthritis."

-This explanation is packaged with each bracelet.

Also there is a "story" behind the entire background of how this bracelet was initiated by the "Buckle Me Up" Movement. From there it has transitioned twice, first to IAAM (International Autoimmune Arthritis Movement" to evolved almost like a butterfly in a cocoon to something incredible which is now a "fully Non-profited Organization known as the "International Foundation of Autoimmune Arthritis".. So through it's "growing" spurts to become a group of people so incredible is remarkable and so is the story behind it. Thus it began by a thought and a bracelet just like this one. When they were still (IAAM) that also have a beautiful motto behind that too:

( The 3 silver beads and 3 black beads represent all people working together to make a

 difference. Red is the color of strength and signifies the strength we all achieve in numbers. The final silver bead symbolizes moving forward to find more and more people to join the movement to raise a global awareness about Autoimmune Arthritis IAAM, sounded out, is "I Am". While we have change our DBA (doing business as) name to the International Foundation for Autoimmune Arthritis (due to the addition of research to our scope), the awareness portion of this organization is still a "Movement" of awareness. Therefore, the IAAM is on the awareness bracelets. In addition, the "Buckle Me Up!" Movement is written inside to remind each person who wears it where this all began and how far we've come as a community.

Our Message for this Autoimmune Arthritis Awareness bracelet focuses on this statement. Each bracelet is packaged with the Message below:

"I Am...

A Leader for Change,

Hopeful,

A Believer in Progress,

And Rebranding Stereotypes.

I Am an Advocate for

Autoimmune Arthritis Awareness." )

(The portions in the () are directly from International Foundation for Autoimmune Arthritis URL: http://ifautoimmunearthritis.org and you can also see their Facebook page at: International Foundation for Autoimmune Arthritis

For myself, this is the perfect opportunity to also tell why this Foundation absolutely means so very much to me. The founder Ifaa Tiffany Westrich-Robertson and her story that she has about how long she suffered well before FINALLY getting a physician that KNEW something diagnosed her, reminds me so much of myself. I also trudged along for years (like many of you) to get "misdiagnosed" with everything from "soup to nuts" as the saying goes. So, after she finally had a grip on the real reasoning behind her years of symptoms, then she knew there was a very strong need in our nation and in fact our world, of getting this out there to say "Hey Wake Up" to doctors, the medical researchers, patients and caretakers, families!!! It was TIME to do something! But what? As myself, I am but one person. I am "limited" in many ways to "get my point across to the many, many people out there that I don't have a way to fully open the doors to a grand eye opening "movement" of sorts. Yet she was able to take something so very simple, and create it, put her story and her whole reasoning for the bracelet online on the right place at the right time... and from the 1st moment of "but one" person, became thousands around the world!!!! So as I said above, I have always wanted to be able to shout out to everyone that will listen, and "heed" what I say to "DO SOMETHING" I feel "my voice" through her own battles has truly been spoken to whom I've always wanted it to. Now at the right time, and in the right place, I've been added to the glorious "fold" of men and women who share a strong desire to make all of this happen, larger, more verbally, online to potentially millions of people, that we need CHANGE> Change that means a "Quicker recognition of "symptoms" by health professionals, A Quicker diagnosis so people can "delay" or even "stop" damage of the joints and the body before it takes its toll", "Quicker medications, that take these illnesses and "kick" them out of the body, or halt them in a way that "remission" and possible wellness are something that can be achieved. and Last but not least "A Quicker, stronger, verbal, out reaching message to researchers, to those who can donate their time, or funds and help a cause have those researchers WANT to study these diseases, illnesses and syndromes to perhaps even "heal" us "before" we even know we are ill. Everything above I've said I feel a strong conviction that through the IFAA, it's Founders, and all of its Volunteers, all and more of these things will be achieved!!!!! I hope you take some time to go to their Website, go to their Face book page, ask me questions for now I am a piece of their "pie" as an Active Volunteer, and go to my own blog. I will be putting up this information, and I blog quite frequently about this group! 

Chronic Illnesses/Autoimmune Arthritic Diseases - Do You "always" HEED Your Physicians' Advice?

Must you "think" you have to do "All" Your Doctors Tell you to do?


First of All, the "post" below in red is a post I began yesterday evening on Face Book. When I began really getting into the "subject" matter at hand, I KNEW this would make for a HUGE BLOG POST! This is something that just about everyone of us has dealt with one time or the other. If not, then you probably don't go to a physician's office very much!  So, I will let you read the "red" portion - then under it I will "further" write about the title of the blog... "Do You ALWAYS HEED YOUR PHYSCIANS ADVICE??





Well GOSH!!! A MIRACLE HAS HAPPENED!!!! I am already HOME!!! This is WAY too early when you go to our PCP!!!! IF your appointment is at 2:00pm. Usually you spend until about 4:30 pm waiting in that tiny room, staring at the walls! We only had to wait 45 minutes!!! Talk about a joke! Why the hell he insisted Mom come I have no idea. All HE needed was ALREADY there, from Mom's Cardiologist as I SAID!!!! (Twice)... and rather than address her other issues, he begins to exam the stupid shoulder! Then he proceeds to tell her "he dos not think it is a rotator cuff tear" and told her to do two exercises and it should get better!!! Now we never said anything but that it was bothering her. But we did mention we had seen a doctor about it to the nurse. Now, I know for a fact that the "clinic" where my heart doctor and our orthopedic surgeon is DO NOT GET ALONG with the clinic where our PCP, food doctor, my new GYN doctor etc., and also my surgeon who is supposed to be the hernia surgery! So, all he did is mix Mom up. Now she is "questioning" whether to even have the MRI. As I told her number ONE the Orthopedic surgeon is the "expert". And the PCP, is very intelligent, but he is NOT a specialist. SO, I told her to take all of that into consideration as well as how the shoulder feels and is doing (she seemed to think it is better today... well yes, she has not used it in a couple of days, thus of course it feels better. YET, I also told her a doctor is not GOSPEL as far as His "recommendation" as myself, I DID NOT BELIEVE even after FOUR DOCTORS told me there was NOTHING in my left lower abdomen... I KNEW THER WAS!!! So, I went to a doctor until someone knew enough to find the issue. Thus I did, it is two hernia's and at least one needs to be repaired! As my husband and I talked about a while ago, even when we were "growing up", we were "taught" that our "doctors" are like "Gods"... they know it ALL and WE MUST DO AS THEY SAY!!! BULL!!!!!! OF course you NEED to pay attention and for the most part take your doctors advice. BUT it is NEVER mandatory you MUST do as they say or not say..Ultimately it is YOUR body, you know it better than anyone... and if you do not agree, either just don't do it, or do it, or find another doctor! I learned about 25 years ago or more, I NEVER think my doctors know everything, or do I think they can DO NO WRONG! As a whole the majority of our physicians are highly educated. the continue to be educated, they pass board exams, etc... BUT THEY CAN MAKE errors... or just because they say something does not mean you have to agree with it a little, a lot or at all!!!! Actually this is a HUGE issue, and I am going to put a big blog post up about this very thing.... from first of all, they are "human"... second of all, not all of them are "nice" especially surgeons... and so forth... it will make for a terrific blog posting:) I'll work on it tonight and in the morning and post here a link when I have it completed!






Onto further discussion of this subject...

As I got into up in the Face book portion of this post, I began writing about how just a few years back, most of us, whether you were younger and growing up, or you were already an adult, when you went to your doctor (for the most part we saw ONE doctor for just about everything!)

I recall our "MD"S" here in Ennis could "do surgery", deliver baby's, treat you for the flu, or any illness, an take care of just about anything you needed. Unless it was some extremely odd, you were not "referred" to a specialist. There wasn't that many "specialized" doctors then. They saw you if you were an infant, or if you were elderly. It was a "one stop shop" as you could call it.
Then I began to notice right after my daughter was born, (after 1985 forward) many of our regular MD's stopped delivering babies. Several here just stopped all together. They sent you to an OB/GYN for that. I realized at that time, if I doctor did it "all" he was up, day and night, away from home, especially if you did any type of emergency stuff for your patients or a baby was coming you had to be there. So, it made sense to send women to a doctor that did that type of stuff. In fact, I guess there was a time we did not have a doctor right here in town to deliver, so you either went to Corsicana or Waxahachie for a pregnancy. That was also when you did not have a "stick" to pee on to tell you about a pregnancy or not. I "guessed" both times just due to the morning sickness etc. 

Then I began to see our older doctors, our MD's that did everything from "soup to nuts" retiring. They were all elderly, and were tired and worn out. I feel some stayed on way too long just because at the time we didn't have many doctors here. As we progressed over the next few years, I began to notice we had more specialists popping up. Our MD's the newer ones coming up, chose NOT to deliver babies, or do surgery. The left things like that up to the more specialized physician's. Again the problem with that was "lack of specialists" in small towns. You traveled usually to Corsicana, if not DALLAS, for many things that the family practitioners were not handling anymore. I think for many of us, it was a HUGE change! 

You had folks like my Daddy that remembered when the DOCTOR CAME to YOUR HOUSE! A family member went and got them. Then the doctor came to you, you didn't go to him. But that soon was to be changed as our small communities began to grow. Then you had people my age, that were used to a "family doctor" doing it all. So, even at first with myself and others my age, this "specialist" stuff seemed like more of a burden than anything. Well of course it wasn't too long until doctors began to branch out from that "family practice" into more and more specialized fields. We had a larger population even in smaller communities, we were more of a "mobile" country, everyone just about by then had a car in the family, so we could go to a specialist in the next town. They knew more about particular health problems, than our regular doctors. So, they were much more of a help, knew more about the "latest and greatest" whether medications, surgeries, tests, lab work. That specialist had been trained to be "specific" as to the needs of patients sent to him.  


In those first years of the "specialists" I feel most people were thankful for the change. Especially when it came to more of a "serious" illness such as heart issues, kidney, lung, stomach all of our vital organs, having someone that performed medicine on a daily basis of that one type just made sense. 
From there, and I'm not exactly sure why; but taking an "educated" guess we began to see more doctors going into a further very highly specialist part of the medical field were a couple of things. First of all, we had a larger population. Thus the more people, the more illnesses we began to see. People began to live longer, thus the "elderly" population living more years meant they were subject to becoming ill with other diseases, such as diabetes, arthritis and the like. The 2nd reason was due to the fact that a physician that went to college and through all of his studies in a much highly specialized field of medicine, meant they would be able to charge more, thus make more money. I'm sure that is not how we like to think about it, but of course it is true. The higher the specialty, the more money they are able to charge for having those talents and education. 

But, bringing it up to "this day and time", and doctors have just about "specialized" themselves to the place of being ridiculous! I know some of it again is more people, living longer, more research means we know about more illnesses and how to treat them. And again the "higher" up chain of speciality means the higher they can bill insurance and the patient. A great example of being to the point of almost ridiculous in specializing, is what I went through with the "double vision". 

I had it come up suddenly one night, and thought since it was late evening, watching television, and the fact I had not been sleeping well at all for weeks, I was just having problems from lack of sleep. So I let it ride about 2 weeks, and decided to have a visit with my opthamologist.  So, I went in to see them, they saw that I had "double vision" going on, put a "prism" in my glasses, and wanted me to see a "specialist" that in all honesty, I had never heard of. This was a "neuro-opthamologist." So, since I am already used to the fact with autoimmune arthritic illnesses along with my other ailments that are chronic in nature, no longer is it uncommon that I am sent to some type of a specialist. I go home, with the name of one, which turned out did not take my insurance. I began my own search online, along with my insurance information, and come to find out there were only 3 of these specialists in the state of TX & at the time 2 in the DALLAS AREA! So, I see one that looked promising online, etc. I call figuring it would be MONTHS before I would get it. this doctor could see me that week! My thought was that since he did something that high up on the "food chain" of sorts, he probably did not have a huge cliental. I go a few days later to his office in Dallas, and not only did he have a HUGE number of patients, his STAFF had to be something like 50 PEOPLE!!!! It was totally nuts!!!! To try and shorten this story, it came to pass yes he had MANY patients, because he was the ONLY specialist in Dallas that took these types of patients, other than one other one that took months to get an appointment with.

All in all, I went to the other doctor at Southwestern Medical University in Dallas, who was in my book a "REAL" doctor. That is why it takes months to get into him, and the other doctor first of all was a total "jackass", another story that I told right after that happened, but he also had this "trained" staff that did EVERYTHING!!! They did every part of the exam, put it all in the computer, and took you to put you in a dark little tiny room to see the doctor. Well, he never even touched me, examined me, nothing... all he did was look at what the results from ALL of the other people did, make a stupid remark, and say he wants to see you in a week! You can just imagine the shock and frankly horror I felt! My husband and I left there in total SHOCK that a doctor of his "magnitude" ran basically a "cattle farm". You were "herded from room to room, poked and prodded by his "staff", then sent onto listen to him saying nothing, but see you in a week! He put me on a bit highly dose of predisone, done blood work that he admitted would probably not be accurate due to the fact I am already on prednisone, and and when the blood work did come back with a very "slightly" raised level of inflammatory problems (well yes I have autoimmune illnesses) he decided to do a biopsy on my temporal artery. here is this doctor, who has not laid a hand on me basically, have had his staff run the same stinking eye tests on me for 3 visits, and now he wants to suddenly do a biopsy on the side of my head. I SHOULD HAVE LEFT THEN!!!! 

So, now this leads me to the MAIN SUBJECT I want to talk about. I realize that was a long route to get here, but I felt it necessary for me to mention just ONE of my situations with a doctor that I KNEW was not right. Yet, even with all of my research and due to it being "DOUBLE VISION" and if it were "Giant cell Temporal Arteritis" that meant without proper treatment I would eventually go blind. So, when you are faced with some that could be that potentially detrimental to your health, you tend to "disregard" your own feelings of RUN! I did actually go to my regular MD about it before having him "cut" the side of my head open a bit" and also take a slice of my temporal artery out, I needed another opinion. My MD just wanted to make sure I "followed the specialist" guidelines because in all honesty my PCP has not been in on this at first. I went directly to my eye specialist and from there was sent to another "specialist" so my PCP really did not even know about the double vision until just before the "biopsy". 
Against my own judgement, even after weighing it back and forth with my husband; we thought the doctor was a "quack" that was in such a specialized field he could do people this way, because he was about the only doctor in this entire area with this type of training. Other than that it meant going to Austin or Houston! 
I finally, still with much hesitation, went to allow him to do the biopsy. Now, that entire thing was such a horror story that morning, that I won't get back into it now. But, there is a post about the whole thing sometime about October of last year. I will look it up and post the link to it here after I finish my post... he did some thing that was SO TERRIBLY WRONG I filed a formal complaint against him to the Texas State Board of Physicians. Then they did take it so seriously that the investigated and even had a hearing about it. I could have went, but I chose to send a letter to the judge instead. It was in Austin, thus I felt I had given them enough information, along with the hospital it happened at, my presence was not necessary. 

This brings me to the "POINT" at hand. Do YOU as a PATIENT always take your doctors word as "GOSPEL?" So you feel that even though you may have a gut feeling that is different, or possibly you have researched all of the in's and out's of the "diagnosis", or symptoms, seen something that made more sense on Social Media, and so forth, you should NOT question your doctor's "authority"? If they tell you, you need a "certain" test, or even possibly surgery, do you just rely on the fact that he is the "expert" and whatever your physician (s) say is right? Do you think you have the right to question them about what they say? Can you tell them you don't agree possibly with all or part of what he or she tells you. Another thing, if you do research online and find what you feel maybe something such as a new medication, or more critical advice that certainly could pertain to you, do you print it and take it in? Do you take a list in of points you want to discuss? Do you feel YOUR time is as VALUABLE as your doctor's? Do you feel it is okay for them to say they will "charge you" if you are over 10 minutes etc late to see them, but they can make you sit for hours, while they are "chronically" late every time you go in? While we are on this subject, this also pertains to your pharmacist. So you think your pharmacist has the right to disagree with your doctor about a particular medication, treatment, etc? Plus do you think your pharmacist should have the right to sit down, discuss ALL of your medications with you, and be allowed to "change" something? Plus the "insurance" company you have "tells" your pharmacist they get paid for every patient they have a "consult" with!!!! 

Now I've opened several cans of worms. My hopes are to get YOU to thinking about your own situations as patients. For one for myself, I totally feel that it is OKAY for you NOT to feel your doctor is always right. They are "human", in fact usually overbooked and busy humans. Now I have noticed they do not even take a moment to glance at your chart. They barge in looking hurriedly at you, ask you a few questions, and if you do not stop them yourself (after you waited for HOURS to see him or her) they zoom right on out the door, the nurse hurries you out and down the hallway. The front office makes an appt. for a follow up if necessary, collects your co-pay if applicable, and out the door you go. This is before you had a chance to ask one question, after you've waited possibly hours for them, and it is always they had an "emergency". Now I agree any doctor for the most part can have some thing emergent. BUT, NOT ever time you go in for an appointment that ha been scheduled for 3 months or more! That has turned into the most ridiculous excuse, and very old. I half the time or  more do NOT believe that! What the have done, is booked 2 or 3 PATIENTS at the exact same TIME, thus he can't be in 3 rooms at once. Then if he has a patient that does stop him with a list of questions, and expects answers before he flies out the room, of course he has to answer and you are the one, that if you don't make him stay and answer questions that gets the raw end of the stick so to speak. So, you can believe when I go for a "follow up" visit that is one I should have my "time to speak" I take MY LIST and he does NOT leave that room, until I am satisfied that I've gotten the answers on the questions. If it taken 5 minutes or 30 minutes, mine probably dread seeing me come, because the they know me well enough to know if I have that yellow piece of paper in my hand, I do have a list. 

I have heard of a case of a lady here in the nation, that got more than tired of having her time taken up for hours and hours every time she went into her doctors office. So, after putting up with it for a long while. She kept up with just how late he was so she could prove it. Then she put together an "invoice" and mailed it to him with a note that it was for the "loss" of time she had due to his chronic tardiness. She had it just in detail about hours, days, etc. Now, I don't know what happened. I am sure she did not ever see a dime! BUT, she did get national media attention, which put it on his mind and other doctors that a patients time is just as important as theirs. We have lives, jobs, families and all that need our attention also, rather than sitting fir hours in a cold 6 by 6 foot room, waiting for he or she to show. 

What about thinking a doctor is "God"? And what he says has to be the "gospel" of being right as to what maybe wrong with you, what tests you need, if you need surgery and so forth?

WAKE UP FOLKS!!!! This is a NEW TYPE OF WORLD!!!! WE for the most part have the ability to find out information from all around the world, from the best specialists, the best colleges, researchers, and organizations that can give us all kinds of great information on why, what, how, when where and so on!!! With a few key strokes you can see what the FDA is doing on a new drug possibly coming out, new meds in the clinical trials that you may qualify to even be in. You can reach out to other physicians that do put their information online or are willing to try and answer some of your questions. You can virtually watch someone else have the exact same surgical procedure that maybe in your near future. From any type of medication, to any type of disease, illness, syndrome, lab work, MRI, CT, PET, and the many, many other types of tests... you can see them, read about them, and even talk about them if you chose. We are becoming a group of people that will be looking for a higher speciality in how we are being treated as a patient. So, I feel we, any and all of us have the right to question our doctors, decide if a 2nd opinion is in order, or maybe even a 3rd or 4th! If you have a "gut feeling" that tells you something is just not Kosher, then LISTEN to yourself! Often since we know our bodies better than anyone else, if we pay close attention it will "tell" you what is happening. Now, that does not mean we are always right either. But, taking a very good look, and listen to the grander situation, and also not only that gut feeling, but objectively. In other words, try and think about what is happening and what doctors maybe telling you about someone else and you are there as a care taker, so you can have a vision all the way around when it comes to decisions about your health. OUR HEALTH is the MOST IMPORTANT piece of our lives. If we are not in good health in some way whether it be acute and temporary, or chronic and long term, we cannot be who we want to be, and do the things in life that we want to do. 

So, listening to your own mind and heart about illness, medications, doctors, procedures, surgeries and so on, is vital for you to make a choice that you later can live with. I know the couple of times I allowed myself to be kind of "hornswoggled" into a medical situation before I had time to weigh it, I  wound up to regret it. 

Doctors are just humans, that yes have a great deal more education than many of us, in the medical field. For the most part, your doctors are probably giving you good advice and treatment. If they tell you something, then more than likely you can bank on it is necessary. But, anytime you have that feeling, no matter how large or small what it is you are questioning, do so.

You can FIRE YOUR DOCTOR! If you have a physician that is just not a "good fit" in any way, find another one to go to. I decided a long time ago, unless it was just a point that I could not for some reason see another doctor, I have several things, but two HUGE ones when it comes to staying with a particular physician. They MUST have a good "bedside manner"! Unless I may not see that doctor again for some reason it may not be that important. But if it is somebody I am going to have to see on a regular basis, they MUST have a good, preferably great bedside manner. The other is that they MUST not mind me looking things up online, or printing something to bring in and so forth. Now, I don't mean I am going to question everything, every time that happens. If I don't trust my MD that much,, then I would change doctors. What I mean is I don't want some grouch to tell me, oh you don't know what your'e talking about. Or just because you look something up online, you can really trust it... and so on... They need to be open minded to the fact we do have that capability and many online resources are very reputable. 

The fact of the matter for me is, I have been through so many physicians, of all different types of specialities, some maybe 3 or 4 of the same specialty...due to the chronic types of illnesses I have, I feel I have more than the right to research my own illnesses, my medications, treatments, and if something sounds "better", or not so good... or whatever I may find, I feel my doctors should absolutely listen to mat at the very least. If they agree, then that may mean I get a better treatment, and possibly it may help someone else along the way, or if it is something not for my situation, then I expect my doctor to take a moment to explain why they feel that way. 

As I had said in my original Facebook post at the top in regard to what I told my Mom. YOU don't have to DO or NOT DO any and everything a doctor tells you. They are not SUPER human, and even though they do know more than us in many ways, they can still "miss the mark" or just be wrong. You have to think for yourself... and go by what feels "right" for you.

I just went through it. I went to 2 of the PA's in my PCP office. I went and had a sonogram (of which I told the tech it does NOT show up when I lie down). Thus nothing showed on the sonogram. But I also knew that LUMP was not THERE BEFORE and SOMETHING WAS WRONG... and after I did enough research I knew more than likely it was a hernia, and not cancer or something like that. I also found out that hernia's usually do "disappear" and especially on women are hard to detect. So, I go to my Gynecologist, and again she has no clue. I go BACK, see our other PA, and she right away says it is a hernia, and the other knot the just began a couple of days just before on the right side is also a hernia. Plus I find out they are genetic in women! Thus my daughter is subject to the possibility she could also have one or two. Even the surgeon told me they are extremely had to detect in women... but it is there and at least the left one does have to be repaired) SO, again just a reminder even when you have been through that MANY "doctors" you can still come up and find they "missed it"... and you may "find it"....


I would LOVE TO HEAR your stories about this, and your thoughts...... 

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