Annual Family Christmas Letter for 2013....

                   How Can It Be Christmas 2013 Already?

I’ve been contemplating over writing this “annual Christmas Letter” for weeks. Although it is a tradition, and I am not one for altering traditions; life in itself gives you no choice BUT to alter, change, move, forward, backward, and sometimes even upside down, as far as the traditional sense goes.

I do just sit here in wonderment of just how quickly this year has flown by. It seems each February that rolls around (my birthday month), makes that year fly by swifter than the one before. As kids we fuss that it takes such a long time for holidays, a new school year, Summer to arrive, time for us to have our driver’s license, time to graduate… 
After you are out of school, in a job, possibly have a spouse, a family, and all of the hustle and bustle that goes with those things, time seems to “turn a page” in a greater way than the years before. Marriages seem to go by more quickly, kids grow up just all too fast, and then you are again by yourselves, with an occasional visit from the kids and the Grand kids. 

As I watch my own Grand kids grow, they are also growing from one stage in childhood so fast, and the next thing you know, they are like my Grand Daughter Heather. Here she is a teenager and getting her driver’s license as they turn 16 in the blink of an eye. My oldest Grand son James jut turned 8 on the 6th of December. As I looked at all of his  birthday pictures on Facebook earlier this morning, my memories were of him, just practically a newborn a few weeks after we moved back to Texas in 2005. I am amazed as I think about them visiting at that time, with their first newborn son together; yet now their is the 2nd one Logan, who is sure not a baby anymore either. It was so cute to see Logan right beside James every step he made in those pictures! He follows his “big brother” around everywhere he goes. Then again I see Heather, the oldest as a young woman, not the tiny 2 year old child she was when I first met her. Time has flown by, and it does just seem to fly more quickly with each turn of a page in life. 

We tend to take “time” for granted. So, rather than spend this moment of time fussing about how time flies by, I’ll spend these few moments to let you know a bit about the homes of our families.

Mom is doing well. In fact, she is doing much better than the rest of us in many ways. Her health is good. But, she did go through a bit of a scare with her heart earlier in the year. She had been a bit short of breath, but she called me one morning to say she could not even walk to the mail box without being very winded. So, I called, got her into the doctor, and they thought it was her heart. They wheeled her over to the ER at the hospital next door. Her EKG, blood work, and all indicated she did not have a heart attack, so that was a good thing. In fact her doctor kept her overnight, and monitored her heart, along with doing labs every few hours to make sure nothing was awry. He wanted her to see a cardiologist just for the sake of making sure all was okay. in fact I took her to my own cardiologist, who is just wonderful. Dr. Meg Sullivan put Mom with a couple of other tests, and one was an echocardiogram. There was a “severe” abnormality of her mitral valve, which would not have been caught on an EKG or blood work. It was “sloppy” and loose, thus blood with oxygen is not all getting where it needs to be, thus causing her to be out of breath. The first “echo” was showing this in the “severe” range. That usually means open heart surgery, the only way to repair that valve. I think they have some doctors doing it with a scope, but I am not sure just how well that is going yet. Anyway, I asked Dr. Meg if we could do something “else” before we consider going through a huge surgical procedure. Mom was of course stunned and certainly NOT ready to even think about open heart surgery and I was also quite stunned myself. I think our cardiologist saw that neither of us were exactly thrilled and in fact both of us, Mom and I were in shock. That was the last thing we expected to hear. So, the doctor did suggest that Mom could “increase” one of her medications, Lasix, so it would take MORE fluid from her body. With that, even less sodium intake, adding more Potassium to her schedule, and “decreasing” the amount of fluids she drank daily. Believe it or not, it worked! The Lord was certainly on her side and all of ours. Two weeks after she began this routine, they did another ultrasound on her heart. Not only did the issue go from “severe”, but decreased that “sloppiness” so much, that her mitral valve was almost “normal”, rather than appearing diseased! Talk about miracles! That was a miracle. So far, that was at the first of the year, she has not had any real issues again. I am sure it may come to give problems some day, but for now, she had a 6 month check up about a month ago, and all appears to be well. I was extremely thankful. Mom has been so very fortunate health wise, that I am not sure she would stand to go through something that dramatic as far as a surgical procedure. She is having some horrible pain issues with her right shoulder. It has gotten so bad she is unable to even comb her hair. I’ve been fussing for her to see our Orthopedic surgeon. I feel it could be her neck, since I went through much of the same with mine. After having a shoulder replacement on the right, then also having cervical neck surgery due to continued pain in my right shoulder blade, I fear her issues could be cervical neck related also. Other than this issue with her shoulder, and of course she is having more problems with arthritis, and a bit “feeble” like having to watch going up and down stairs, holding onto rails more, and that kind of thing, she is doing very well to be 78 years old. She sends her love to all.

Both Jason and Amanda; along with Amanda’s husband and three children are all doing okay. Jason recently took a job not far from where Amanda and her family live; about 30 minutes out of Corpus Christi. So, he spends quite a bit of time with her and her family. I  am happy that they have one another close now. They have been close to each other, ever since they grew out of that “kid sister - older brother” stage years ago. It is wonderful to see them enjoy one another and have a good relationship. She stays on the go as usual. Never a dull moment with the three kids and their friends and families. She just doesn’t know “yet” how to sit still very long! Reminds me of “me” when I was her age. 

Jason decided to change a few things in his life. He is out of the career for now of any type of law enforcement, and is now working for a company out of Corpus Christi in the oil business. He seems to like it, and it seems to be less stressful, of course than the law enforcement jobs. Jason has some issues health wise with what seems to be symptoms of Fibromyalgia. He has had “aches and pains” with his joints for several years now. As of this past year it seems that some other symptoms have cropped up. These newer symptoms seem to exemplify more in the range of “FM” (Fibromyalgia)/“CFS/ME” (Chronic Fatigue Syndrome). He has been taking some medication that seems to be helping and our hopes are that he shall continue to see improvement, and be able to continue on with all of his dreams and plans for the future. 

Well, “our home”. Actually things have been not nearly as “upside down” on the health front as the past few years had been. In saying that, I have had “new symptoms” and side effects from the Autoimmune Arthritic Illnesses. They have not been the most pleasant to say the least. I suddenly developed “double vision” the first part of this year. We first thought it was because I was not getting much sleep. So, I was overly tired most of the time, thus it was effecting my eye sight. I went through several doctors/specialists, lots of tests, including a “temporal artery biopsy”, and in the end, one of the best specialists in the field told me, “Frankly, he thinks it’s the Lupus, but is not sure exactly why it is”. He put a totally different type of glasses on me, with spheres in both lenses. They do a great job correcting the double vision, while I am wearing them. With them off, I still see “double”. Although we are still a bit baffled by it all, we also know when it comes to these autoimmune illnesses that have kind of “taken” over; there sometimes it just “not” a “diagnosis” or “explanation” but to say it is one of those. 
I have made change in the RA medication. I am taking “infusions” every 4 to 6 months. The hope is that this medication will somewhat control the RA pain AND our greatest hope is that it will slow down the progression of the damage to my joints. I have my thumbs that are just in terrible shape. The use of my hands continues to get worse each year. Until I have just about lost all use, or the doctors insist on “fusing” the thumb joints or replacing them, I just do things to help assist me in opening things, buttoning, holding and so on. My only other “oddity” is that I recently developed an “oval lump” on my lower left abdomen. I was at three doctors, had a sonogram, and no one could figure it out! (what’s new)… Finally, one of my regular physicians’, PA (assistant) saw me again, and “bingo” she found the problem right away. Of all things I have a “hernia”, actually I now have 2 hernia’s, one on each side; left and right. Only me! From all I have read and been told, hernia’s (inguinal hernia’s) are EXTREMELY difficult to find in females. Plus, they are usually “genetic” in nature. When we are in the womb, well before even “sex” is determined there are two tubes that form, and after that then the “sex” of the baby happens. But, those “tubes” especially in females can be “weak”. That weakness tends to run in families. So, as my PA told me, my own daughter could be subject to having a hernia or hernia’s also. It is only genetic as far as they know, more on the female side. Even though male babies, often have a hernia(s) when they are born, or very small. But those in themselves, supposedly are not “genetic”. I thought it was “wild” but I did some research and that is exactly what I found. I guess we learn something new no matter how old we are. Life to me stays absolutely fascinating for that reason! No matter how lousy I feel, or what is going on, I still love learning something new all the time! Especially when it comes to the “medical realms” of life. 

Jim, is also having one heck of a time with a shoulder/neck problem. He recently had an MRI, and in fact we have not gotten the results as of the time I am writing this letter. Our hopes are, and fingers crossed, that he is not facing surgery. But, it just does not look good. He stays in a tremendous amount of pain, and of all things, the pain is almost unbearable each time he sits down at the computer to work. Well, being the he designs and develops web sites as a career makes it a bad situation all the way around. I pray that rather than be some that needs surgery, that it may be something that is a “chronic inflammatory” process, which possibly corticosteroids in a larger dose, for an extended length of time, and some powerful NSAID”s maybe the answer. Surgery is just not something he wants to face at all. Plus he is without health insurance at the time. As anyone knows that works for themselves, with things in a mess as they are in our country with the health insurance situation, we are not sure how we will face something surgical in nature. But, I know that our “Higher Power” is watching over us, and “He” will make everything happen as it should be. 

I swore I wouldn’t make this long, but here it is, long as usual. I’ll just say a couple more things. I did have my 2nd PUBLISHED book go out earlier this year. I now have TWO books published, and they are on amazon.com   …   I use the “pen” name of “Rhia” or “Rhiannon” Steele. Both are Poetry/short Prose books, and are named “Ramblings of A Seasoned Soul” and the other is “Time Tattered Musings”. If you want to and have a moment look them up and you can “Look Inside the book” on Amazon, on both and read a couple of pages in them. My hope was to have a “3rd” book out by now. My “dream” to  be a “published” author has came true twice! Yet, my ultimate dream is to have the journey of my life in a book published. I have the entire “story” in bits and pieces all over my computer as well as in my blog online, and dozens of “handwritten” journals I’ve kept since I was around 14 years old. Every time I try to “begin” the book though, I just never quite come up with how I want that very first paragraph, page; the first chapter to sound. All of us have “a book” in us, is what I had a dear friend say to me. In a way that is so true. We “all” have a story about our lives, and how we got from point “a” as a youngster to point “b” in our present, plus we have ideas about point “c” where we hope to be in the future. But, some just never write it. I want to take that step and tell my story. Much of it, I’ve never shared with anyone. Much of it, I have shared but with only those I felt could totally understood where I came from. Yet, everyone that knows me well, especially Mom and Jim, have continued to encourage me to write “the” book, book… as I call it. 

I hope to accomplish that “dream” and write the “ultimate”, “Book, Book”, this year. That is if the “Lord willing and the creek don’t rise”, as the saying goes. As far as the “rest” of our family, “Tazzy” and “Bubba Gump”, our two “fur kids” are just as spoiled rotten as ever. They are getting older also as we can tell. Tazz, our Pug, is the oldest. She came with us from Seattle. That was in 2005. She was about a year old then. Bubba, is a
“Chi-Weenie”, and he is a character. They both keep us laughing, and talk about “separation anxiety”. They “cry” if I or Jim leave to go to the store! Bless their hearts, they are so accustomed to the both of us being with them. But, they are a joy, even though they can aggravate the heck out of us as times also. Just like 2 kids for sure!

My “projects” are many. It seems I always have my “fingers” in a different pie. I recently became an “Active Volunteer” for a non-profit Foundation that is trying to help bring awareness to Autoimmune Arthritic Illnesses. I just “graduated” from a several month class learning about the Foundation, and all they are accomplishing. It is truly an amazing story. The “founder” began about 4 years ago, after she was diagnosed with Rheumatoid Arthritis. She wanted to make a difference and she has truly already done “miracles” through what started out as a “Buckle Me Up Movement” and a bracelet she made with a “belt buckle” at her apartment in San Francisco. From there it has grown to her and 4 “co-founders”, became an official non-profit foundation, and is about 35 volunteers strong and growing quickly. She has honestly accomplished things in 4 short years that many would never accomplish in a life time. And ALL of us have one or more Autoimmune Arthritic Illnesses. The Foundation is International Foundation for Autoimmune Arthritis. I would love it if you have a moment to take a look at their website. Even it does not really tell just how incredible this truly is and how many lives she and all of us as a team shall touch! You can visit the website at: 
http://www.ifautoimmunearthritis.org  …
Also, I will be doing some blogging on their own blog, which is called “Systemically Connected”. Plus my own personal blog, “Gaze Thru Pain - Lupus/RA & This Foggy Brain” is the name of it, and the URL to my blog is :  
http://rhiannonsrisetodreamstate.blogspot.com  …
I have to laugh, of course, as I say every year; I’m not going to make my “Annual Christmas Letter” so long! Of course it is always long, and probably longer than usual. I find as I write, there is lots more that went on during the year, than I think did. 

My hope… Our Hope is the you and your families are healthy, happy, and enjoying one another throughout the holidays. May you find peace, joy, and most of all love throughout 2014 and beyond. Know that we think of you often; even though we aren’t close physically, in our hearts and spirit we are always right there.

Much Love, Merry Christmas and A 2014 that shall be Wonderful!  Rhia,Jim, Tazz, Bubba… and All of Our Family!!!! 

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”. 

"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.

Welcome! I had been working on this blog trying to get blogger software up and going. It seems as if I have accomplished that for now. About Rhia? A great deal of things. I am a poet and writer at heart, including music lyrics. I am also passionate about music, including alternative, rock, blues and country. I love web design and development as a hobby, plus much more. I play the piano, keyboard, the drums and sing. I am continually looking for something new to do, guess I bore easily. I am a lover of people, and am a strong Advocate for several issues, including Domestic Violence, Violence against Women, Breast Cancer, Chronic Pain and Illness, as well as several issues about politics and government. I am 49, was born in a small town in TX, lived in CA and Seattle WA for about 7 years all together, and have a "fur-kid" my pug, named Tazz.

I will add more to this daily.