This is probably one of the simplest of all things for me to write about.Without one doubt my "Grandmothers" blanket that has satin/silk border around the entire thing is and always will be something near and dear to my heart.
It was hers and she kept it in beautiful shape actually for me. I have to say I've worn out MANY blankets with the satin/silk border on them. So even though this one that was my Grandmother's is not the "original" it of course still holds the many memories of me rubbing the silk on my blanket. I've kept them each for many, many years. Once I found one, that had the exact type of "satin" border I loved to rub, I would keep it until every little bit of that was rubbed off before I would give it up.
I have "rubbed" silk on a blanket as far back as I can remember. I guess even before I can recall it, Mom said I did that rather than sucking my thumb etc. I found it a bit embarrassing to say I still do this, and here I am just over 50 years old. but, I do it out of being stressed. Or, if I am sick, or down with a bad flare, then I want that blanket. I will rub that satin anytime I am down and out, stressed out, feeling lousy, the silk is like something that calms me down.
My Grandmother passed away over 12 years ago, yet I still have such incredible memories of her each time I put that blanket on my side of the bed.
I also have another item, that is about as near and dear to me, that in fact is also something from my Grandmother, She had a cookie jar that was covered in different kinds of "cookies". It was ceramic and has a "walnut" for the top on the lid. I LOVED that cookie jar from the time I was old enough to watch her bake in the kitchen. She just about always had home made, from scratch cookies, almost like a tea cake, and they had one "whole half of a pecan" in the middle of each cookie.
I had said for many, many years, that if something happened to my Grandmother I wanted that cookie jar. There were many beautiful pieces of china and silver that we had given her over the years. Yet, that cookie jar held and still holds so many awesome childhood memories for me that take me back to a much more serene, simple time in my life.
So, after she passed away, my Mom made sure it was saved for me. Along with it, was two of my Grandfather's fishing reels, because I fished with him and Dad when I was young, and of course the blanket. Also, I have a completely by hand done quilt that she also did for me.
So, as time continues to pass by, faster it seems with each day, there are a couple of "material" items that always help to bring back those wonderful times when I played under the shade trees at home in the Summer with my table and chairs, or fished for "crawdads" in the ditches around my Grandparents house, watched Dad garden, take care of quail he used to raise, go fishing, go to the deer lease, vacations, and many, many incredible memories at my Grandparents home, from all of our family holiday dinners, to just how wonderful it was to have a place that almost felt like a refuge from life when it seemed almost too much to bear.
Wednesday, April 8, 2015
The Links to both of my Poetry and Prose Books on Amazon and also my Profile....
I have not really been "advertising" my two poetry and books and I should share these with you. It has been awhile since I mentioned them, and since I am probably about half way into completing my 3rd "autobiographical" look into my own trials and tribulations with autoimmune illness, chronic pain and my winding forever river of all things "Autoimmune" to me.
My 3rd book, is a view from my own self a patient of these horrid illnesses, and what I feel at times others view my as.... whether that be good, bad or indifferent, there are always different views from different people.
I tend to feel most "facebook" and online blogs etc, are where most are in total belief of what you are going through. I don't "feel" or see that as much on a daily level around my own little neck of the woods.
Several reasons, from some not "seeing" me when I am the most ill. Some because they just have not really seen me or been able to talk with me. People have busy lives and often even though you may run face to face with someone you know, does not mean there is time to really "explain" the complexities of any type of chronic illness, and most especially any type of "autoimmune illness(es), chronic pain" and how many medications, doctors, surgeries, and even the daily "grind" of every moment of your day evolves around being chronically ill..
I know MANY of us try our best to "put aside" the thought of a daily illness; yet if we really are honest with ourselves, and take a good inventory of our life day to day, we absolutely have to come to terms with "Yes, I am chronically ill", "Yes, it does in many ways rules my life", and although I may not want to come to terms with it, my life and those around me, can change from moment to moment.
I can be sitting here typing away right now, feeling sore, tired, achy and so on. Yet, in 10 minutes I might be so ill that I have to be taken to the Urgent Care Center, the ER, my own physician, or even hospitalized depending on the situation.
So, even though we try not to allow this "anxiety causing, horrific, abusive, sometimes very harmful" chronic autoimmune diseases, we still have to understand that they do in some ways rule over our lives. It would be almost impossible for them not to....
Anyway, so here are the links to my poetry books, and my "Author" about me page...
My 3rd book, is a view from my own self a patient of these horrid illnesses, and what I feel at times others view my as.... whether that be good, bad or indifferent, there are always different views from different people.
I tend to feel most "facebook" and online blogs etc, are where most are in total belief of what you are going through. I don't "feel" or see that as much on a daily level around my own little neck of the woods.
Several reasons, from some not "seeing" me when I am the most ill. Some because they just have not really seen me or been able to talk with me. People have busy lives and often even though you may run face to face with someone you know, does not mean there is time to really "explain" the complexities of any type of chronic illness, and most especially any type of "autoimmune illness(es), chronic pain" and how many medications, doctors, surgeries, and even the daily "grind" of every moment of your day evolves around being chronically ill..
I know MANY of us try our best to "put aside" the thought of a daily illness; yet if we really are honest with ourselves, and take a good inventory of our life day to day, we absolutely have to come to terms with "Yes, I am chronically ill", "Yes, it does in many ways rules my life", and although I may not want to come to terms with it, my life and those around me, can change from moment to moment.
I can be sitting here typing away right now, feeling sore, tired, achy and so on. Yet, in 10 minutes I might be so ill that I have to be taken to the Urgent Care Center, the ER, my own physician, or even hospitalized depending on the situation.
So, even though we try not to allow this "anxiety causing, horrific, abusive, sometimes very harmful" chronic autoimmune diseases, we still have to understand that they do in some ways rule over our lives. It would be almost impossible for them not to....
Anyway, so here are the links to my poetry books, and my "Author" about me page...
 |
| http://smile.amazon.com/Ramblings-Seasoned-Soul-Brush-Strokes/dp/1461061946/ref=asap_bc?ie=UTF8 |
 |
| http://smile.amazon.com/Ramblings-Seasoned-Soul-Brush-Strokes/dp/1461061946/ref=sr_1_1?ie=UTF8&qid=1428505245&sr=8-1&keywords=Rhia+Steele |
Tuesday, April 7, 2015
Sjogren's - The Stigma of "Loss" - Dentures at barely 50 years old
If anyone would have walked up to me just 7 years ago, and told me that I would lose every tooth in my mouth within 7 to 10 years, I would have called them much more than I liar.
From the time I was about 13 years old, I was already repressed about my looks. I was never an "overweight" child. In fact, until I was in about the 5th grade, never would I have figured I would have a weight problem. Yet, as I said, by the time I was in the 5th grade, I began to have issues with my weight. I was never to the point of being "obese" but I had extra weight on me, that did give the other kids something to make fun of me about.
I also inherited two top "large" front teeth. My Dad, my half brother, myself, and then even my son all have issues with larger than really should be front two top teeth. So, when I turned 13, I began to be embarrassed not just about the weight, but more about those large front teeth. I also had crooked teeth, especially about the middle 6 on the bottom. In fact, my parents had taken me to an orthodontist, and they had began removing some of my molars in order to make room to straighten my teeth. I also believe he would have "lessened" the two tops ones as the others began to be straight. So, I went through having some molars pulled, and had impressions made to begin the braces. Yet, for some reason (now since I am an adult I figure money) my parents decided against the braces. I recall just how upset I was. I knew my teeth were ugly, and I always my entire life dreamed of having "pretty teeth".
Years went by, and for many reasons, money also probably a huge one, I never went ahead even after being an adult had my teeth straightened. I could have, but I guess by then I "thought" the stigma was a bit silly. Just like I wanted a larger "chest", yet I was given a small set of boobs, and unless I wanted to go through the surgery and cash to have them enlarged, I would have to live with those also.
Life went on, I married, twice, had two kids, that are now grown, and one with 3 kids of her own, and as I said earlier, not but about 7 to 10 years ago, the two things I FEARED MOST, were losing my hair for some reason, or losing my teeth. I had lost a "half of a top tooth" at 25, in a 4 wheeler accident. My dentist was able to save the tooth, added onto it, and it remained fine until about a year ago.
Then I was diagnosed after many years of all kinds of symptoms of having "autoimmune illnesses". I went through several different doctors and diagnosis before we hoped we are about on the right road. Yet, even now, 7 years after those first autoimmune issues came to light, I wonder each day if we are missing one or more of them.
I've began to see that "autoimmune illnesses, diseases, syndromes... they work in "packs", almost like wolves. They catch you when you least expect it, you are usually overtaken by not just one, but two, three and sometimes more of them. Even though they may have "their own set" of unique symptoms, for the most part, they usually have such similar symptoms, that even trying to make a proper diagnosis is impossible. That is why so many of us may change from one diagnosis to the other, like the wind changes direction. You may have a set of symptoms that "blinks like a red light" saying LUPUS! Then within months, weeks, or possibly a longer period of time, something shows that you also have Rheumatoid Arthritis, Sjogren's, Raynauds. Ankylosing Spondylitis, or other AI's like MX, Myasthenia Gravis, temporal arteritis, vasculitis and again that list can be almost continues into infinity. So, you may have one, two, or more of these conditions at any given time. Some may flare more than others, and usually after a deal of time passes, patients can usually know which one or ones are causing a "flare". Lupus is one for me that seems to cause me the most fatigue, mouth ulcers, a headache that is inflammatory, and nearly intractable. The only way to possibly "halt" it, is a huge injection of a corticosteroid, and a round of "step down" Prednisone.
So, the issues with Sjogren's as I watched was one of these illnesses, that no one seemed to take much "interest" in. I mean as far as my health issues. Of course part of that is due to not knowing a great deal about the disease. Other issues are that I believe most doctors, even specialists tend to be more concerned over vision problems, even the loss of vision, rather than on how it can effect each and almost every part of your body. "Connective Tissue" in the joints and throughout our bodies need "moisture" to keep them supple and usable. So, when Sjogren's comes aboard and takes that moisture away from our bodies, any and everything could be effected. Of course dry eyes and dry mouth. But, there is connective tissue in the joints, spine, between some of our organs, and any organ that needs its own moisture in order to function can be dramatically effected or altogether stopped from having the necessary bodily moisture it needs to survive.
So, I as have stepped aside just a bit on my own venture with Sjogren's and how its effected my entire life, yes, it has created such a huge stigma for me, even larger than my "artificial knees, right shoulder, pain pump internally implanted, the scars from surgeries, and all of the other things that have happened to cause me to have doubts about my own perception of my body, my face, and how others see me.
I realize that my entire face has somewhat changed due to the dentures. Especially since the bottom dentures were "pinned down" last week. My mouth seems to be so much "fuller". Well, it is different. It has also effected my speech, how I say some words, and some I have a difficult time saying at all now. My eating habits are totally different. I felt my "diet" routine would settle back down to its own normal once the bottom dentures were more secure daily. Yet, now I am once again having to completely re-adjust to having them in, pinned down, and then how my top dentures "fit in" with the bottom ones now. My eating will never be the same. Many things I loved so much that I used to eat, I may never be able to eat again.
Between the horrid expense, which by the way, the bill after all is said and done, is right at $10,599.00. Now that does not include about the first 2 or 3 teeth that I had to have pulled out at first. Those are the ones that first broke off at the gum line. I went into my "regular" dentist and he pulled a couple of them before we even knew how bad my teeth were. But, of all things my own dentist has severe osteoarthritis, in both hands. It is so bad that there are many things he cannot do any longer. That is why I went to this other dentist after a couple of these teeth broke off. My own "regular" dentist just could not pull a back molar that had broke off, so then is when the digital entire mouth type of X-ray was made and then we saw that every tooth in my mouth was in one way or the other in the process of decaying rapidly.
So, you could add another $400.00 plus onto that figure above, and the whole situation was more like $11,000.00!!!! Plus, guess what? Just like many of you out there, I have NO dental insurance. And even though this was proven to be all caused from an "illness" and had nothing to do with my dental hygiene or any of that, I griped, fussed, threatened, cried, and begged to try and get a portion of this paid for by my health insurance. Yet, I never saw a dime. Even though I filed all of the claims myself, with all of the diagnosis coding and so on, my insurance refused to pay one dime on any of it.
Another little known fact, or was for me. Each dentist charges a bit differently. Some, charge in upwards of $25,000.00 or more, when ALL of your teeth must be pulled first. Or if you choose to try and "save" some of your teeth, which by the way I would NEVER suggest at all, to ANYONE with Sjogren's as bad as mine to "repair and save" some of your teeth, then just put in the others that were so bad in a partial. Bull!!! If you already have teeth that are "rotten" from the inside out, like mine were, no way, no how would I ever spend MUCH MORE MONEY to do root canals, caps, bridges and so on, only to have the others eventually fall out anyway. So, then you are stuck with another astronomical bill, and I've seen that type of work estimate at a definite $20,000.00 to well over $28,000.00 or more.
My dentist did two "treatment plans". One was to "save" what teeth he could. Do root canals, bridges, overlays, and then partials to replace the missing ones. That was actually HIGHER by about $3,500.00 over what it was to have them ALL PULLED and put in the dentures, including "mini implanted titanium pins" to hold the bottom ones in place. So, it was not brain science to me. Spend thousands more to "save" what I would lose anyway, probably sooner than later. Or go with the whole shooting match, hook, line and sinker... and hopefully be over with it, until "Gabriel blows His Horn"!
Now, as I've told this, I will say this once again. These "dentures" and having to have them as early as I've had to in life, has implanted its own "stigma" upon me.
OF course I've tried my very best to make "lightly" of it, by saying, WOW, now I have my "pretty teeth"! One of my dreams come true. Now, I will actually smile a bit in photos. Yet, underneath all of the lighthearted portions of it, still looms this "seething emotion" of just how much more will these horrid diseases take from me?
They take my energy, my brain at times, cause me to be ill more, have almost cost me my life back in 2010, have probably been the culprits in me having horrible, almost intractable headaches again. They have taken so many pieces of daily living away. By keeping me more tired, or causing me to move more slowly, not be able to think as quickly, or get dressed as quickly... the times I've had to postpone a family holiday celebration, or not be able to go out shopping.
There is not one thing in life that autoimmune illnesses don't effect. Whether it is the person ill, with them, physically, mentally and emotionally. It effects those people around the person that is chronically ill. It can change the scope of relationships in marriage, family, friends and more. It can cause you to have to lose or quit a job. Your entire life completely is turned upside down and right side up. Often this actually occurs more than once. For with "each" diagnosis can come a new set of circumstances.
So, as much as I am "heavyhearted" at times about the loss of my teeth, how it happened, why it happened, and why there was not more done about it earlier in my life, I AM GLAD that I am able to have the dentures and my hopes are that they last the rest of my own lifetime.
From the time I was about 13 years old, I was already repressed about my looks. I was never an "overweight" child. In fact, until I was in about the 5th grade, never would I have figured I would have a weight problem. Yet, as I said, by the time I was in the 5th grade, I began to have issues with my weight. I was never to the point of being "obese" but I had extra weight on me, that did give the other kids something to make fun of me about.
I also inherited two top "large" front teeth. My Dad, my half brother, myself, and then even my son all have issues with larger than really should be front two top teeth. So, when I turned 13, I began to be embarrassed not just about the weight, but more about those large front teeth. I also had crooked teeth, especially about the middle 6 on the bottom. In fact, my parents had taken me to an orthodontist, and they had began removing some of my molars in order to make room to straighten my teeth. I also believe he would have "lessened" the two tops ones as the others began to be straight. So, I went through having some molars pulled, and had impressions made to begin the braces. Yet, for some reason (now since I am an adult I figure money) my parents decided against the braces. I recall just how upset I was. I knew my teeth were ugly, and I always my entire life dreamed of having "pretty teeth".
Years went by, and for many reasons, money also probably a huge one, I never went ahead even after being an adult had my teeth straightened. I could have, but I guess by then I "thought" the stigma was a bit silly. Just like I wanted a larger "chest", yet I was given a small set of boobs, and unless I wanted to go through the surgery and cash to have them enlarged, I would have to live with those also.
Life went on, I married, twice, had two kids, that are now grown, and one with 3 kids of her own, and as I said earlier, not but about 7 to 10 years ago, the two things I FEARED MOST, were losing my hair for some reason, or losing my teeth. I had lost a "half of a top tooth" at 25, in a 4 wheeler accident. My dentist was able to save the tooth, added onto it, and it remained fine until about a year ago.
Then I was diagnosed after many years of all kinds of symptoms of having "autoimmune illnesses". I went through several different doctors and diagnosis before we hoped we are about on the right road. Yet, even now, 7 years after those first autoimmune issues came to light, I wonder each day if we are missing one or more of them.
I've began to see that "autoimmune illnesses, diseases, syndromes... they work in "packs", almost like wolves. They catch you when you least expect it, you are usually overtaken by not just one, but two, three and sometimes more of them. Even though they may have "their own set" of unique symptoms, for the most part, they usually have such similar symptoms, that even trying to make a proper diagnosis is impossible. That is why so many of us may change from one diagnosis to the other, like the wind changes direction. You may have a set of symptoms that "blinks like a red light" saying LUPUS! Then within months, weeks, or possibly a longer period of time, something shows that you also have Rheumatoid Arthritis, Sjogren's, Raynauds. Ankylosing Spondylitis, or other AI's like MX, Myasthenia Gravis, temporal arteritis, vasculitis and again that list can be almost continues into infinity. So, you may have one, two, or more of these conditions at any given time. Some may flare more than others, and usually after a deal of time passes, patients can usually know which one or ones are causing a "flare". Lupus is one for me that seems to cause me the most fatigue, mouth ulcers, a headache that is inflammatory, and nearly intractable. The only way to possibly "halt" it, is a huge injection of a corticosteroid, and a round of "step down" Prednisone.
So, the issues with Sjogren's as I watched was one of these illnesses, that no one seemed to take much "interest" in. I mean as far as my health issues. Of course part of that is due to not knowing a great deal about the disease. Other issues are that I believe most doctors, even specialists tend to be more concerned over vision problems, even the loss of vision, rather than on how it can effect each and almost every part of your body. "Connective Tissue" in the joints and throughout our bodies need "moisture" to keep them supple and usable. So, when Sjogren's comes aboard and takes that moisture away from our bodies, any and everything could be effected. Of course dry eyes and dry mouth. But, there is connective tissue in the joints, spine, between some of our organs, and any organ that needs its own moisture in order to function can be dramatically effected or altogether stopped from having the necessary bodily moisture it needs to survive.
So, I as have stepped aside just a bit on my own venture with Sjogren's and how its effected my entire life, yes, it has created such a huge stigma for me, even larger than my "artificial knees, right shoulder, pain pump internally implanted, the scars from surgeries, and all of the other things that have happened to cause me to have doubts about my own perception of my body, my face, and how others see me.
I realize that my entire face has somewhat changed due to the dentures. Especially since the bottom dentures were "pinned down" last week. My mouth seems to be so much "fuller". Well, it is different. It has also effected my speech, how I say some words, and some I have a difficult time saying at all now. My eating habits are totally different. I felt my "diet" routine would settle back down to its own normal once the bottom dentures were more secure daily. Yet, now I am once again having to completely re-adjust to having them in, pinned down, and then how my top dentures "fit in" with the bottom ones now. My eating will never be the same. Many things I loved so much that I used to eat, I may never be able to eat again.
Between the horrid expense, which by the way, the bill after all is said and done, is right at $10,599.00. Now that does not include about the first 2 or 3 teeth that I had to have pulled out at first. Those are the ones that first broke off at the gum line. I went into my "regular" dentist and he pulled a couple of them before we even knew how bad my teeth were. But, of all things my own dentist has severe osteoarthritis, in both hands. It is so bad that there are many things he cannot do any longer. That is why I went to this other dentist after a couple of these teeth broke off. My own "regular" dentist just could not pull a back molar that had broke off, so then is when the digital entire mouth type of X-ray was made and then we saw that every tooth in my mouth was in one way or the other in the process of decaying rapidly.
So, you could add another $400.00 plus onto that figure above, and the whole situation was more like $11,000.00!!!! Plus, guess what? Just like many of you out there, I have NO dental insurance. And even though this was proven to be all caused from an "illness" and had nothing to do with my dental hygiene or any of that, I griped, fussed, threatened, cried, and begged to try and get a portion of this paid for by my health insurance. Yet, I never saw a dime. Even though I filed all of the claims myself, with all of the diagnosis coding and so on, my insurance refused to pay one dime on any of it.
Another little known fact, or was for me. Each dentist charges a bit differently. Some, charge in upwards of $25,000.00 or more, when ALL of your teeth must be pulled first. Or if you choose to try and "save" some of your teeth, which by the way I would NEVER suggest at all, to ANYONE with Sjogren's as bad as mine to "repair and save" some of your teeth, then just put in the others that were so bad in a partial. Bull!!! If you already have teeth that are "rotten" from the inside out, like mine were, no way, no how would I ever spend MUCH MORE MONEY to do root canals, caps, bridges and so on, only to have the others eventually fall out anyway. So, then you are stuck with another astronomical bill, and I've seen that type of work estimate at a definite $20,000.00 to well over $28,000.00 or more.
My dentist did two "treatment plans". One was to "save" what teeth he could. Do root canals, bridges, overlays, and then partials to replace the missing ones. That was actually HIGHER by about $3,500.00 over what it was to have them ALL PULLED and put in the dentures, including "mini implanted titanium pins" to hold the bottom ones in place. So, it was not brain science to me. Spend thousands more to "save" what I would lose anyway, probably sooner than later. Or go with the whole shooting match, hook, line and sinker... and hopefully be over with it, until "Gabriel blows His Horn"!
Now, as I've told this, I will say this once again. These "dentures" and having to have them as early as I've had to in life, has implanted its own "stigma" upon me.
OF course I've tried my very best to make "lightly" of it, by saying, WOW, now I have my "pretty teeth"! One of my dreams come true. Now, I will actually smile a bit in photos. Yet, underneath all of the lighthearted portions of it, still looms this "seething emotion" of just how much more will these horrid diseases take from me?
They take my energy, my brain at times, cause me to be ill more, have almost cost me my life back in 2010, have probably been the culprits in me having horrible, almost intractable headaches again. They have taken so many pieces of daily living away. By keeping me more tired, or causing me to move more slowly, not be able to think as quickly, or get dressed as quickly... the times I've had to postpone a family holiday celebration, or not be able to go out shopping.
There is not one thing in life that autoimmune illnesses don't effect. Whether it is the person ill, with them, physically, mentally and emotionally. It effects those people around the person that is chronically ill. It can change the scope of relationships in marriage, family, friends and more. It can cause you to have to lose or quit a job. Your entire life completely is turned upside down and right side up. Often this actually occurs more than once. For with "each" diagnosis can come a new set of circumstances.
So, as much as I am "heavyhearted" at times about the loss of my teeth, how it happened, why it happened, and why there was not more done about it earlier in my life, I AM GLAD that I am able to have the dentures and my hopes are that they last the rest of my own lifetime.
World Health Day! Tuesday 7th, April 2015 WEGO Writers Challenge #6 #HAWMC
After being diagnosed with many illnesses, mainly chronic in nature, our diet can make a huge difference in the way we feel.
For instance, those who are diagnosed as diabetic usually find themselves on a diet with much less sugar, carbohydrates, and things that can raise their blood sugar and make them even more diabetic. The lifestyle also usually includes weight loss, if weight it a contributing factor, and more exercise.
Those with certain types of headaches, such as migraines have what some call "triggers". Some of those triggers that can cause this type of headache can be certain wines, certain types of cheese, and other foods that can also make the headaches more frequent or worse than they already are.
With all of the different diets on the market today, what is sad is just how many of us in this nation are considered either "overweight" (20 pounds over your suggested weight), or worse "obese", which is 20 plus pounds over your suggested weight. Americans tend to be one of the most obese nations in the world. With all of our high calorie, high fat content, high carb foods; especially those right at our fingertips at fast food, drive through places to eat, we lead the world in the most ill people that have weight as a huge factor.
Heart attacks, diabetes, strokes, joints wearing out, legs that cannot hold our weight without some type of assistance such as a cane, or walker have became a common site in this nation. What is worse, is how many of those that do have health issues that are directly effected by what they eat, don't do the correct things even though they realize it is detrimental to their health.
As far as the Lupus, Rheumatoid Arthritis, Sjogren's, my joint replacements, osteoarthritis and heart problems, I don't necessarily follow to the exact "t" a so called diet of any kind. But, I have always been very careful to watch my intake of calories, carbs and bad fats, due to not wanting to develop other problems such as diabetes. Also, more weight puts a difficult strain on your legs, knees, hips, and feet. It also can effect the stress on your spinal column. So, anyone who has had or does need to have a joint replacement, especially below the waist should try to maintain a healthy weight, and get the exercise recommended in order to have success with a replacement joint.
There are things now since I've been diagnosed with Sjogren's that I must do on a daily basis that does effect my diet. I must have something to "sip" on all the time. I am constantly with some type of diet drink, green tea iced, at times water, but I carry a drink with me everywhere. If I don't my mouth and throat get so dry, it is like I have an entire mouth full of cotton. Or it feels as if someone put glue all over my mouth, and it sticks everywhere. I take Lasix daily. Since it is a diuretic, is another reason why especially in the warm months, I must try and continue to keep hydrated at all times. I could get my electrolytes out of whack and cause me to lose too much potassium. Which if it gets low enough, can put you at the very least in the ER, getting IV potassium, or like a friend of mine just lately, had to be admitted for a couple of days in order to get her potassium level back up. Potassium being too low in the body can cause severe fatigue, severe muscles aches and pains, cramps of the muscles, and set your heart rate off, or you could possibly die if it got too low and was not taken care of properly very soon. So, having the proper balances of those types of minerals in our bodies is critical for many reasons.
I have always tried to stay on a diet of fresh vegetables, fresh fruits, very little red meat, more chicken, fish, and beans. I also buy most everything I can that is lower in fat and calories, such as cottage cheese, I buy Almond milk, lower calorie, "butter spreads", low calorie sour cream, and so forth. I use Splenda, rather than sugar or brown sugar. I use low calorie or Splenda based products such as soda, cake mixes, frostings, and any other baking or cooking product that is with less fat, calories, and uses items such as Splenda to lower the "bad calorie" counts, and so forth.
Since I love to bake, I have all types of recipes that I use and I substitute things such as using "egg beaters" or an equivalent, Splenda of course, I use wheat flour most of the time, buy low calorie canned milk, cream cheese lower in fat and calories, salad dressings and on.
We have SO MANY of "both" choices, even in our fast food and sit down restaurants. Buffets now tend to have lots of choices at their salad bar, and have many vegetables, usually baked fish, and alternatives to your higher in calorie or fats, like red meats, and so forth.
Many of our fast food places have now put calorie counts, fats, and carbs right on their items. They also have began to offer alternatives to high fat foods, especially to the kids. Applesauce and milk rather than fries and a soda. Yet, with ALL of the changes, still we have an ever growing population of obesity, to the point of being an epidemic in our country. As ridiculous as that sounds, due to the number of work out gyms, running tracks, and activities with baseball, soft ball, little league, soccer kids, and so many activities to keep the kids fit, and more on their good weight side, our kids are growing up to be very young, very obese adults. The numbers of children with a weight problem, high blood pressure issues, being diabetic very early, having all types of joint problems, and much more is a trend that just needs to be under control.
Of course that all starts with the parents, and what they offer and teach their kids to eat at an early age. Both of my children, watched me live on lower calorie, low fat foods, walk 5 miles a day, back then did some aerobics, and kept my weight in check.
Keeping my own weight in check for many years has been a task that was not and still is not all that easy. I've had issues in keeping the weight off since I was a teenager. Not due to what I ate when I was younger, and not because I did not get out and play. But, due to possibly some type of "genetic" issue I fought since I was about 20 years old to keep an extra weight off. In fact, I almost went the opposite way about 10 years ago, just before I came to know about my autoimmune problems. I got down to honestly a dangerously low weight. I stood back then about 5'5"tall, and got down to 101 pounds. As much as I loved the "0" clothes, and the extra small clothing, I know other were very concerned. By the time we had moved back to Texas, and I got settled in, then began to have multiple joint and joint replacement surgeries, my weight then came up to somewhat normal. I lost a few pounds, and fight daily with about 5 to 7 pounds I want to keep off because I feel my joints certainly don't need it.
I still try to maintain a diet of fresh vegetables, fresh fruit, and star away from most red meat. I use ground turkey for anything that might call for "ground meat". I also make "turkey burgers" when I am making burgers at home. I've also ordered a turkey burger in a restaurant and have had them very flavorful. I don't "fry" anything. I either use my slow cooker, (for instance I make home made turkey chili), bake, broil, and sometimes grill meats. I've researched some items as far as food goes that could help with the autoimmune illnesses. But, for the most part, making sure to eat a well balanced daily healthy diet, along with some type of regular exercise program seems to be the best way I can take care of myself as far as my eating habits with the autoimmune illnesses.
Rhia Steele 4/7//2015
For instance, those who are diagnosed as diabetic usually find themselves on a diet with much less sugar, carbohydrates, and things that can raise their blood sugar and make them even more diabetic. The lifestyle also usually includes weight loss, if weight it a contributing factor, and more exercise.
Those with certain types of headaches, such as migraines have what some call "triggers". Some of those triggers that can cause this type of headache can be certain wines, certain types of cheese, and other foods that can also make the headaches more frequent or worse than they already are.
With all of the different diets on the market today, what is sad is just how many of us in this nation are considered either "overweight" (20 pounds over your suggested weight), or worse "obese", which is 20 plus pounds over your suggested weight. Americans tend to be one of the most obese nations in the world. With all of our high calorie, high fat content, high carb foods; especially those right at our fingertips at fast food, drive through places to eat, we lead the world in the most ill people that have weight as a huge factor.
Heart attacks, diabetes, strokes, joints wearing out, legs that cannot hold our weight without some type of assistance such as a cane, or walker have became a common site in this nation. What is worse, is how many of those that do have health issues that are directly effected by what they eat, don't do the correct things even though they realize it is detrimental to their health.
As far as the Lupus, Rheumatoid Arthritis, Sjogren's, my joint replacements, osteoarthritis and heart problems, I don't necessarily follow to the exact "t" a so called diet of any kind. But, I have always been very careful to watch my intake of calories, carbs and bad fats, due to not wanting to develop other problems such as diabetes. Also, more weight puts a difficult strain on your legs, knees, hips, and feet. It also can effect the stress on your spinal column. So, anyone who has had or does need to have a joint replacement, especially below the waist should try to maintain a healthy weight, and get the exercise recommended in order to have success with a replacement joint.
There are things now since I've been diagnosed with Sjogren's that I must do on a daily basis that does effect my diet. I must have something to "sip" on all the time. I am constantly with some type of diet drink, green tea iced, at times water, but I carry a drink with me everywhere. If I don't my mouth and throat get so dry, it is like I have an entire mouth full of cotton. Or it feels as if someone put glue all over my mouth, and it sticks everywhere. I take Lasix daily. Since it is a diuretic, is another reason why especially in the warm months, I must try and continue to keep hydrated at all times. I could get my electrolytes out of whack and cause me to lose too much potassium. Which if it gets low enough, can put you at the very least in the ER, getting IV potassium, or like a friend of mine just lately, had to be admitted for a couple of days in order to get her potassium level back up. Potassium being too low in the body can cause severe fatigue, severe muscles aches and pains, cramps of the muscles, and set your heart rate off, or you could possibly die if it got too low and was not taken care of properly very soon. So, having the proper balances of those types of minerals in our bodies is critical for many reasons.
I have always tried to stay on a diet of fresh vegetables, fresh fruits, very little red meat, more chicken, fish, and beans. I also buy most everything I can that is lower in fat and calories, such as cottage cheese, I buy Almond milk, lower calorie, "butter spreads", low calorie sour cream, and so forth. I use Splenda, rather than sugar or brown sugar. I use low calorie or Splenda based products such as soda, cake mixes, frostings, and any other baking or cooking product that is with less fat, calories, and uses items such as Splenda to lower the "bad calorie" counts, and so forth.
Since I love to bake, I have all types of recipes that I use and I substitute things such as using "egg beaters" or an equivalent, Splenda of course, I use wheat flour most of the time, buy low calorie canned milk, cream cheese lower in fat and calories, salad dressings and on.
We have SO MANY of "both" choices, even in our fast food and sit down restaurants. Buffets now tend to have lots of choices at their salad bar, and have many vegetables, usually baked fish, and alternatives to your higher in calorie or fats, like red meats, and so forth.
Many of our fast food places have now put calorie counts, fats, and carbs right on their items. They also have began to offer alternatives to high fat foods, especially to the kids. Applesauce and milk rather than fries and a soda. Yet, with ALL of the changes, still we have an ever growing population of obesity, to the point of being an epidemic in our country. As ridiculous as that sounds, due to the number of work out gyms, running tracks, and activities with baseball, soft ball, little league, soccer kids, and so many activities to keep the kids fit, and more on their good weight side, our kids are growing up to be very young, very obese adults. The numbers of children with a weight problem, high blood pressure issues, being diabetic very early, having all types of joint problems, and much more is a trend that just needs to be under control.
Of course that all starts with the parents, and what they offer and teach their kids to eat at an early age. Both of my children, watched me live on lower calorie, low fat foods, walk 5 miles a day, back then did some aerobics, and kept my weight in check.
Keeping my own weight in check for many years has been a task that was not and still is not all that easy. I've had issues in keeping the weight off since I was a teenager. Not due to what I ate when I was younger, and not because I did not get out and play. But, due to possibly some type of "genetic" issue I fought since I was about 20 years old to keep an extra weight off. In fact, I almost went the opposite way about 10 years ago, just before I came to know about my autoimmune problems. I got down to honestly a dangerously low weight. I stood back then about 5'5"tall, and got down to 101 pounds. As much as I loved the "0" clothes, and the extra small clothing, I know other were very concerned. By the time we had moved back to Texas, and I got settled in, then began to have multiple joint and joint replacement surgeries, my weight then came up to somewhat normal. I lost a few pounds, and fight daily with about 5 to 7 pounds I want to keep off because I feel my joints certainly don't need it.
I still try to maintain a diet of fresh vegetables, fresh fruit, and star away from most red meat. I use ground turkey for anything that might call for "ground meat". I also make "turkey burgers" when I am making burgers at home. I've also ordered a turkey burger in a restaurant and have had them very flavorful. I don't "fry" anything. I either use my slow cooker, (for instance I make home made turkey chili), bake, broil, and sometimes grill meats. I've researched some items as far as food goes that could help with the autoimmune illnesses. But, for the most part, making sure to eat a well balanced daily healthy diet, along with some type of regular exercise program seems to be the best way I can take care of myself as far as my eating habits with the autoimmune illnesses.
Rhia Steele 4/7//2015
Monday, April 6, 2015
"My Hero" - WEGO Health Writers Challenge Month for April 2015
I guess I could say I have a couple of "hero's" that have helped to guide me along the way of life. One in particular was back when I was a teenager. It was our next door neighbor, a nurse at the local hospital that was right around the corner from my home. In fact, she still lives in the same house, right next door to my Mom, as they always have. Of course Dean (the neighbors name) has long since retired, but the things she taught me back then have lasted throughout my life.
She brought me in as a "Candy Striper" with the red and white striped pinafore and the write blouse underneath. I even worn white shoes, that almost looked like nurses shoes back then. I got to do so many things that most other girls that came in to be one of these volunteers probably may not have gotten to do. She took me under her wing, taught me how to sterilize and "autoclave" instruments back then. They did not have many instruments that were "thrown away". Most were stainless steel, and they were sterilized, put in certain packs for certain surgeries, then put in an "autoclave" that really sterilized them from all germs, bacteria and so on.
She let me take care of the newborns, I took them out to their Mom's, and we even made "Christmas stockings" for the ones born at Christmas to send them home in. In fact, one Christmas I was in the local paper with a new Mom and Dad, and their baby going home in one of the stockings we made.
There are so many things Dean influenced me on, and being a nurse was something I wanted to do for the most of my younger years. But, she also taught me much more than just about nursing. She was like a "2nd Mom" to me. She showed me how to crochet, how to do counted cross stitching, and embroidery. She took me to Dallas shopping with her quite a bit. She taught me to sew.
When I was abut 14 years old, I had an extremely bad circumstance that happened to me, and she was the only person I felt I could go to about it. Even though eventually I had to tell my Mom of course, she was always the first person I went to no matter what the problem was. Of course now, the years have taken much of our communication away. We see one another every now and then, but she is about 90 years old plus, and has her own set of health issues, and her own kids, grand kids and great grand kids that help her, and she helps them.
Yet, time has never taken away all that I learned from her. The memories, and many of the things she taught me continue to have an influence on my life today.
I am so grateful for those young years with her, and how some of what I learned back then from her, continues to help me through life. Plus many of the things she taught me, had shaped my advocacy, activism, and volunteer work through out these past 7 to 10 years also.
There is another young woman that stepped into my life a bit over a year ago. She is one of the most compassionate people I know. Her ability to make you feel "useful" and "needed" is just something I don't see much in others. For the most part life keeps us so wrapped up in our own daily "grind" so jobs, family, friends, and so forth at times also effect how we treat others. Laura is so patient. No matter how busy she is, there is always time that she takes to answer a question, or send a quick email back. I've learned so much about advocacy over the past year with her help, plus I've also learned a great deal about myself, and just how strong I am and often don't realize it. I have also been taught so much about how "one email", one voice, one post, or even a phone call or letter can make a huge difference.
I used to think like many others, "How can I, just one person, ever make a difference in how the government, or some other place think on a certain illness, disease, treatment and so forth"? Yet, through the teachings of her, and her way of showing me just how much of a difference my voice does make; taught me to help others, and encourage others to do the same. I now try and persuade those that think as I did, gosh there is no way a call to my local, state, or federal Congress Member will ever make any change. Yet, our voices do make change! Our efforts, whether an email, voice mail, Twitter post, or any other Social Media post, can be the turning point in changing how research, funding, from the medical profession to our own government entities "see" these chronic illnesses, syndromes, and such. It can mean the difference between funding getting out there for a new medication, or a study that could mean the end to some of these illnesses. But, if "I" don't make a step forward, then I am not teaching others to do the same.
Thus, through this bright, intelligent, vibrant, patient, and very benevolent woman, I have learned just how important it is for me to speak up, speak out, and tell my own story. If I tell my own, then I am giving others the courage to also step forward and tell their stories.
I've had a couple more people that truly are my "hero's". My Dad, my Mom, and several others along my winding rivers path of life. But, the two I've really mentioned are those that helped to shape my life, my goals, aspirations, and ability to keep on "fighting the good fight" against chronic illnesses and chronic pain.
She brought me in as a "Candy Striper" with the red and white striped pinafore and the write blouse underneath. I even worn white shoes, that almost looked like nurses shoes back then. I got to do so many things that most other girls that came in to be one of these volunteers probably may not have gotten to do. She took me under her wing, taught me how to sterilize and "autoclave" instruments back then. They did not have many instruments that were "thrown away". Most were stainless steel, and they were sterilized, put in certain packs for certain surgeries, then put in an "autoclave" that really sterilized them from all germs, bacteria and so on.
She let me take care of the newborns, I took them out to their Mom's, and we even made "Christmas stockings" for the ones born at Christmas to send them home in. In fact, one Christmas I was in the local paper with a new Mom and Dad, and their baby going home in one of the stockings we made.
There are so many things Dean influenced me on, and being a nurse was something I wanted to do for the most of my younger years. But, she also taught me much more than just about nursing. She was like a "2nd Mom" to me. She showed me how to crochet, how to do counted cross stitching, and embroidery. She took me to Dallas shopping with her quite a bit. She taught me to sew.
When I was abut 14 years old, I had an extremely bad circumstance that happened to me, and she was the only person I felt I could go to about it. Even though eventually I had to tell my Mom of course, she was always the first person I went to no matter what the problem was. Of course now, the years have taken much of our communication away. We see one another every now and then, but she is about 90 years old plus, and has her own set of health issues, and her own kids, grand kids and great grand kids that help her, and she helps them.
Yet, time has never taken away all that I learned from her. The memories, and many of the things she taught me continue to have an influence on my life today.
I am so grateful for those young years with her, and how some of what I learned back then from her, continues to help me through life. Plus many of the things she taught me, had shaped my advocacy, activism, and volunteer work through out these past 7 to 10 years also.
There is another young woman that stepped into my life a bit over a year ago. She is one of the most compassionate people I know. Her ability to make you feel "useful" and "needed" is just something I don't see much in others. For the most part life keeps us so wrapped up in our own daily "grind" so jobs, family, friends, and so forth at times also effect how we treat others. Laura is so patient. No matter how busy she is, there is always time that she takes to answer a question, or send a quick email back. I've learned so much about advocacy over the past year with her help, plus I've also learned a great deal about myself, and just how strong I am and often don't realize it. I have also been taught so much about how "one email", one voice, one post, or even a phone call or letter can make a huge difference.
I used to think like many others, "How can I, just one person, ever make a difference in how the government, or some other place think on a certain illness, disease, treatment and so forth"? Yet, through the teachings of her, and her way of showing me just how much of a difference my voice does make; taught me to help others, and encourage others to do the same. I now try and persuade those that think as I did, gosh there is no way a call to my local, state, or federal Congress Member will ever make any change. Yet, our voices do make change! Our efforts, whether an email, voice mail, Twitter post, or any other Social Media post, can be the turning point in changing how research, funding, from the medical profession to our own government entities "see" these chronic illnesses, syndromes, and such. It can mean the difference between funding getting out there for a new medication, or a study that could mean the end to some of these illnesses. But, if "I" don't make a step forward, then I am not teaching others to do the same.
Thus, through this bright, intelligent, vibrant, patient, and very benevolent woman, I have learned just how important it is for me to speak up, speak out, and tell my own story. If I tell my own, then I am giving others the courage to also step forward and tell their stories.
I've had a couple more people that truly are my "hero's". My Dad, my Mom, and several others along my winding rivers path of life. But, the two I've really mentioned are those that helped to shape my life, my goals, aspirations, and ability to keep on "fighting the good fight" against chronic illnesses and chronic pain.
 | |||
#HAWMC |
Sunday, April 5, 2015
News To Muse - #HAWMC Wego's Writers Challenge 2015 "Breaking News"
First of all, I am sure, like myself, many of us really "want" to talk about our triumphs, yet we don't want to seem to be "gloating", "selfish", or as if we feel w are the only people in this world that are doing things "right".
The last 5 years have been up and down for me. Right off the very first, my main accomplishment, that took the entire year of 2014, was to become a "Platinum Ambassador" for the Arthritis Foundation! When I received the email telling me that, I was a bit more than elated. It did take a great deal of effort on my part to go that "extra mile" as it's called, to get to be in that "status" for the AF. Hand in hand with that, was my 2014 Washington DC Summit on the Hill visit, that I went on with the Arthritis Foundation, and I got to do ONE of the couple of things I had always dreamed of in life. That one was to "stand upon the steps of the White House" and tell my own story of the horrid nightmare of these illnesses, ranging from Rheumatoid Arthritis, osteoarthritis, JRA, and of course other autoimmune illnesses that can sometimes run hand in hand with them.
There I was, living my dream. I did get to tell my own story, several times to members of Congress and/or their legislative assistants. I did not really "stand upon the steps of the White House" to do it, but being in the Halls of Congress, both House and Senate was close enough.
I was proud that I had been able to develop a good relationship with my Federal Representative in my District, which included getting to go to a "Town Hall Meeting" last year when he was here, back home where I could also once again tell my story.
In the past 5 years, I've also got to live my first dream I guess you could say. I became a "published" author. What was even sweeter about that deal, was that I not only got one book published, but actually published 2 books, within about 6 months apart.
I am thrilled that my activist, advocate. and ambassador tasks are becoming more. In other words, rather than just contributing to my own Facebook, Twitter, Pinterest, and Blog; I've been able to do many other items of advocacy work with some very famous non-profits, which I feel in itself has been and will continue to be a remarkable force that within me, drives me to want to help others. So, those things I do that make life either less painful, less stressful, possibly develop research in the future, or even find a cure, I am thrilled that I have remained steadfast in my activism. I hope to for many years to come.
I've had several articles published about my activism, as well as about my books being published in our local newspaper. That is always something that gives me a feeling of "accomplishment". Even though there are many places I wished would pick up on my blogging and writing, if I never do, I will always and forever feel the pride that comes with having a blog that stays very up to date, and being able to see others follow me on Facebook or Twitter.
I have also had 3 different "Proclamations" dedicating an entire month to "Lupus Awareness". Two of those were actually were signed by the Governor of Texas. The other was signed by the Mayor of my town. I have those proudly framed and on my wall around my desk.
I've survived having ALL of my teeth pulled because of the Sjogren's literally rotting them from the inside out within less than a year. So, it took almost a year to the day that I spent several occasions in the dentist chair for hours, getting the rest pulled, then having dentures put in. Due to the Sjogren's then the last portion that actually just took place, was to have "mini implanted titanium pins" put into my bottom jaw, in order to hold my bottom dentures in place. Between my own bone structure, and the lack of saliva because of the Sjogren's, I spent about 4 months trying to keep those bottom ones from "floating" around anywhere they pleased. I just finished the process up on March 31st, a few days ago. Believe me, as many things in life can be nerve racking, having that many teeth have to be pulled (even though some had not fallen out, they showed in the special digital X-ray to be all rotted). I would not wish any of that on an enemy. But, sometimes we have no choice in life but to do something that is not really all that pleasant.
So, all in all, even though I am not one to be able to "pat myself on the back", or "toot my own horn", I will say that over the years I've been elated with my own actions that lead into helping others. Those are the moments that I am the proudest of.
WEGO Writer's Month Challenge #HAWMC
The last 5 years have been up and down for me. Right off the very first, my main accomplishment, that took the entire year of 2014, was to become a "Platinum Ambassador" for the Arthritis Foundation! When I received the email telling me that, I was a bit more than elated. It did take a great deal of effort on my part to go that "extra mile" as it's called, to get to be in that "status" for the AF. Hand in hand with that, was my 2014 Washington DC Summit on the Hill visit, that I went on with the Arthritis Foundation, and I got to do ONE of the couple of things I had always dreamed of in life. That one was to "stand upon the steps of the White House" and tell my own story of the horrid nightmare of these illnesses, ranging from Rheumatoid Arthritis, osteoarthritis, JRA, and of course other autoimmune illnesses that can sometimes run hand in hand with them.
There I was, living my dream. I did get to tell my own story, several times to members of Congress and/or their legislative assistants. I did not really "stand upon the steps of the White House" to do it, but being in the Halls of Congress, both House and Senate was close enough.
I was proud that I had been able to develop a good relationship with my Federal Representative in my District, which included getting to go to a "Town Hall Meeting" last year when he was here, back home where I could also once again tell my story.
In the past 5 years, I've also got to live my first dream I guess you could say. I became a "published" author. What was even sweeter about that deal, was that I not only got one book published, but actually published 2 books, within about 6 months apart.
I am thrilled that my activist, advocate. and ambassador tasks are becoming more. In other words, rather than just contributing to my own Facebook, Twitter, Pinterest, and Blog; I've been able to do many other items of advocacy work with some very famous non-profits, which I feel in itself has been and will continue to be a remarkable force that within me, drives me to want to help others. So, those things I do that make life either less painful, less stressful, possibly develop research in the future, or even find a cure, I am thrilled that I have remained steadfast in my activism. I hope to for many years to come.
I've had several articles published about my activism, as well as about my books being published in our local newspaper. That is always something that gives me a feeling of "accomplishment". Even though there are many places I wished would pick up on my blogging and writing, if I never do, I will always and forever feel the pride that comes with having a blog that stays very up to date, and being able to see others follow me on Facebook or Twitter.
I have also had 3 different "Proclamations" dedicating an entire month to "Lupus Awareness". Two of those were actually were signed by the Governor of Texas. The other was signed by the Mayor of my town. I have those proudly framed and on my wall around my desk.
I've survived having ALL of my teeth pulled because of the Sjogren's literally rotting them from the inside out within less than a year. So, it took almost a year to the day that I spent several occasions in the dentist chair for hours, getting the rest pulled, then having dentures put in. Due to the Sjogren's then the last portion that actually just took place, was to have "mini implanted titanium pins" put into my bottom jaw, in order to hold my bottom dentures in place. Between my own bone structure, and the lack of saliva because of the Sjogren's, I spent about 4 months trying to keep those bottom ones from "floating" around anywhere they pleased. I just finished the process up on March 31st, a few days ago. Believe me, as many things in life can be nerve racking, having that many teeth have to be pulled (even though some had not fallen out, they showed in the special digital X-ray to be all rotted). I would not wish any of that on an enemy. But, sometimes we have no choice in life but to do something that is not really all that pleasant.
So, all in all, even though I am not one to be able to "pat myself on the back", or "toot my own horn", I will say that over the years I've been elated with my own actions that lead into helping others. Those are the moments that I am the proudest of.
WEGO Writer's Month Challenge #HAWMC
Saturday, April 4, 2015
Creatures of Habit - WEGO #HAWMC for Saturday April 4th 2015
Today's Post for WEGO Health Writers Month Challenge!
What a great post this will be for many! I've mentioned this particular subject pretty often.
We become "engrained" in a certain routine, or something we tend to do daily, or quite often, without even giving it much of a thought.
So, here is my "Creature of Habit" posting...
My daily "routine" is probably fairly boring to most, but for me, it is usually what deems how the "rest of my day" will be. Will I feel behind the entire day, like I am not getting all accomplished as I had planned? Probably! Will I look up and find I have actually done much more at an earlier time than I thought, so I may have a bit of "free time" to write more, and so forth?
My day begins with turning the coffee pot on, even though I quit drinking coffee, I do it because my husband drinks coffee. Talk about a "habit change"? He used to be a morning couple of cups coffee drinker. Now, like my Mom, he has developed a habit of drinking coffee ALL day and even into the evening hours. Weird and strange, but true. From there it is check the dogs water, and check their food bowls, fill them as needed, and put them in their proper places. Since they are both inside dogs, then I have to do a "paper check" clean that up and mop if need be, and put fresh paper down. Okay, then it is off to open all the blinds because I want as much light as possible in our home. So in just about every room, I have blinds I open first thing also so we can have a bit of "light on the subject". I usually join my husband on the front porch to check out the "brand new day" and see how the weather is. Of course TX weather can change within a breath's space, so it could look like it might rain like heck, and in a half hour, be sunny and not a cloud in the sky.
By this time, I am about to "die" for something to drink. Since I don't drink coffee anymore, it is usually iced green tea, with lemon and Splenda, or I've began this Coke Zero, Diet Pepsi, Sprite Zero thing now. I switch back and forth during the day from a "diet" drink to green tea. But, I am ALWAYS with a glass of something to drink in my hand, or a bottle in the car. Due to the Sjogren's, I HAVE to have something to keep my "whistle wet" as the old saying goes.
Then it is onto make the bed. I cannot stand to NOT have the bed made! that is one of those things that would drive me nuts, not to have the bed made up. I get the pups in their places of "habit" on the sofa. Then head to the computer, to check out the weather, see what is happening on Facebook, check out Twitter, and my blog, then I go and begin to weed through the huge load of crud in my email box. Thank goodness we have a "spam" program that for the most part puts the spam mess in a different box, but some of it still slips through, so through that I go, to see if I need to answer emails and so on.
I check the calendar and my "list". I never go a day without a "list" or "lists". Sometimes I may have several lists for different things. I could rarely remember my name if it were not on some kind of list.
Now, onto a "creature of habit" about some things that just drive me nuts. Of course the bed being made is one of them. But, I HATE the phone to ring before 9AM and after 6PM! Unless I am expecting a call before or after those times, it just almost makes me upset. I am one that does NOT like the phone to ring anyway. But. when it rings way too much during the course of a day, or rings too early or late in the evening after we have settled in to watch a movie etc. I get totally disarrayed over the phone ringing. One of my "habits".
I HATE any dish that is sitting not washed. I can't stand to have any unwashed dishes, silver ware, bowls. whatever. Before I go anywhere, or leave home etc. every dish better be washed and at least in the drain rack. Closing the toilet seat is another. One of those things I always do, and just get upset if I find it left up. (This my husband knows all too well!) LOL!!!
I take a handful of certain medications as soon as my feet hit the floor out of bed, and then I take my others about 10 AM every morning, habit that it is, then in most cases, I then eat a bowl of cereal for my morning breakfast, or more out of the habit due to not wanting my medications to upset my stomach. And for the post part it is usually cereal. Sometimes I've bought cinnamon rolls, or made muffins etc. But I am a cereal person, and I rarely ate cereal as I kid. So, that is quite funny and odd now.
Just about every day, I take a "break" about 4PM, and sit down with my pups, one on each side, to watch part of a movie, before time to cook dinner around 5:30PM or so. It is a habit, that I've kept for the most part, unless something takes me away from the house, or I am sick, but most of the time, at 4PM I am with those two pups and on our sofa for about an hour or so.
I always 'Pay" my bills on the 3rd of each month. That is almost "religiously". Unless something is strange as far as how that day falls in the month or so forth, I pay bills every month on the 3rd.
I ALWAYS have a list, my coupons, and my reusable bags when I shop. Never do I go without the very least my reusable bags. The list and coupons are there about 99 percent of the time also.
Every night without question, after we eat dinner, which by the way, is on two of our very nice wooden TV trays in our living room, and we "I" watch the "Nightly News". If the news happens to not be one due to a ball game etc, it just messes up my entire evening. I want to see the news, at that time. It is always on Channel 5 here, and up until "Bryan Williams" had his stuff happen, I always preferred to watch him, another habit.
I NEVER DRY most of my "good clothes" in the dryer. I always hang them on hangers, and let them air dry in the house. Jeans and all. I don't want anything pulled out of shape, or fading, or wrapped around anything, so I never dry my clothes other than on hangers.
I absolutely, unless I am too ill, do some type of writing daily. Whether it is on my blog, Facebook, on my book I am writing now, or even sometimes in an email to a friend, I write daily. I also always as a habit try to do at the very least ONE thing for advocacy. I try and it is definitely a habit, that I do at least one item, and usually it is several a day for advocacy.
I for the most part have a habit of being off the computer by mid afternoon. Unless something is very important, that is when I stop my "computer stuff", do my house hold cleaning, run errands and so on. But by about 2 to 3 PM, I am off the computer.
IF I bake something, which also a habit, I do without fail at the least 3 times a week. I always bake in the morning early. I get that done, and as whatever it is bakes, a cake, pie, cookies, brownies, crumb cakes, or whatever, I bake very early in the morning.
I am in the habit of if there is a shower curtain it must be pulled all the way out to dry. Now with my "glassed in shower" I ALWAYS spray it with shower spray, and open both doors all the way so they will dry out, without fail.
I cannot stand anything on my area rugs. We have wood floors, so we have large area rugs. If there is the least bit of anything on them, I vacuum without fail. I hate seeing those carpets with any thing on them such as lint, crumbs, dog hair, etc.
I am a habitual believer in washing my car by hand. Unless the weather is too cold, or I am ill, I wash the car by hand. I've done that for many years and feel it is much better for the finish if it is hand washed.
I HATE a wet dish towel. I always have two or three out, and I switch them around, so the one that is with the dish drainer is dry. It just irks me to pick one up and it be too wet.
I am in the "habit" of taking care of ALL of our medications. I feel if "I" don't call in refills, or do them through the computer etc. they will not get done correctly. So, I always take care of medication refills, I always do any banking to be done, I always pay the bills, and those are things that I've done as a "habit" all of my grown adult life.
I am in the habit of sending "snail mail" greeting cards to family. I send some online to online friends. But, when it comes to close family, I believe in taking the time to go, pick out the card special for that person, and writing in it to let them know I am thinking of them, and send those snail mail.
I also made it a habit that every year without fail I write a "Christmas letter". It goes out with our snail mail cards, and each year for as long as I can remember I've sent a letter telling others about the past year and what ever I happened during that time.
My "habits" are many when it comes to the routine things in life. It seems since I had a very difficult time when I was a young adult, I have been the "take charge" person in any relationship. I DO it, because whether it is paying a bill, making a doctor visit, buy groceries, and that includes my Mom's things also, I am the one that is in the habit of, I do it. As I said, even with Mom's bills, and anything with paperwork, or making appointments to see the doctor, whatever she has that needs to be done, I am usually the one who takes care of it. I had mentioned above about have issues when I was a young adult. Back then I had two very abusive relationships. One not so much, physical, but more emotional and mental. The 2nd one turned out to be an abusive drama for many years in all ways. From mental, emotional, physical, to not paying bills, or helping to support myself and the 2 kids (I worked full time so usually my own paycheck paid the bills), because the person I was with back then could not keep a job, or spent his paycheck before he even came home with it and so forth. So, at a very early age I decided I would be the one that took charge of most everything that is involved in daily life, from paying bills, to even planning a vacation, I did it myself.
So, creature of habit, yes. There are many other things. I always read on my "new diagnosis" or a "new medication" when that happens. One "habit" that began when my now husband and I first got together over 10 years ago, we without fail, always buy a "Sleigh Bell" Christmas Ornament every year. In fact, we have bought them from the exact same place, and I believe we have at least 11, if not 12 including this past Christmas. No matter what else is going on during the holidays, it is definitely a "traditional habit" that I make sure we get the Christmas Sleigh Bell Ornament by Wallace in fact every year and it comes from a small store in all places Kent, Washington. The first one we bought, we drove down to the actual store and picked it out. After that we moved, so I've had to order them, but it is another one of those wonderful habits, that is a memory maker for the years to come.
What a great post this will be for many! I've mentioned this particular subject pretty often.
We become "engrained" in a certain routine, or something we tend to do daily, or quite often, without even giving it much of a thought.
So, here is my "Creature of Habit" posting...
My daily "routine" is probably fairly boring to most, but for me, it is usually what deems how the "rest of my day" will be. Will I feel behind the entire day, like I am not getting all accomplished as I had planned? Probably! Will I look up and find I have actually done much more at an earlier time than I thought, so I may have a bit of "free time" to write more, and so forth?
My day begins with turning the coffee pot on, even though I quit drinking coffee, I do it because my husband drinks coffee. Talk about a "habit change"? He used to be a morning couple of cups coffee drinker. Now, like my Mom, he has developed a habit of drinking coffee ALL day and even into the evening hours. Weird and strange, but true. From there it is check the dogs water, and check their food bowls, fill them as needed, and put them in their proper places. Since they are both inside dogs, then I have to do a "paper check" clean that up and mop if need be, and put fresh paper down. Okay, then it is off to open all the blinds because I want as much light as possible in our home. So in just about every room, I have blinds I open first thing also so we can have a bit of "light on the subject". I usually join my husband on the front porch to check out the "brand new day" and see how the weather is. Of course TX weather can change within a breath's space, so it could look like it might rain like heck, and in a half hour, be sunny and not a cloud in the sky.
By this time, I am about to "die" for something to drink. Since I don't drink coffee anymore, it is usually iced green tea, with lemon and Splenda, or I've began this Coke Zero, Diet Pepsi, Sprite Zero thing now. I switch back and forth during the day from a "diet" drink to green tea. But, I am ALWAYS with a glass of something to drink in my hand, or a bottle in the car. Due to the Sjogren's, I HAVE to have something to keep my "whistle wet" as the old saying goes.
Then it is onto make the bed. I cannot stand to NOT have the bed made! that is one of those things that would drive me nuts, not to have the bed made up. I get the pups in their places of "habit" on the sofa. Then head to the computer, to check out the weather, see what is happening on Facebook, check out Twitter, and my blog, then I go and begin to weed through the huge load of crud in my email box. Thank goodness we have a "spam" program that for the most part puts the spam mess in a different box, but some of it still slips through, so through that I go, to see if I need to answer emails and so on.
I check the calendar and my "list". I never go a day without a "list" or "lists". Sometimes I may have several lists for different things. I could rarely remember my name if it were not on some kind of list.
Now, onto a "creature of habit" about some things that just drive me nuts. Of course the bed being made is one of them. But, I HATE the phone to ring before 9AM and after 6PM! Unless I am expecting a call before or after those times, it just almost makes me upset. I am one that does NOT like the phone to ring anyway. But. when it rings way too much during the course of a day, or rings too early or late in the evening after we have settled in to watch a movie etc. I get totally disarrayed over the phone ringing. One of my "habits".
I HATE any dish that is sitting not washed. I can't stand to have any unwashed dishes, silver ware, bowls. whatever. Before I go anywhere, or leave home etc. every dish better be washed and at least in the drain rack. Closing the toilet seat is another. One of those things I always do, and just get upset if I find it left up. (This my husband knows all too well!) LOL!!!
I take a handful of certain medications as soon as my feet hit the floor out of bed, and then I take my others about 10 AM every morning, habit that it is, then in most cases, I then eat a bowl of cereal for my morning breakfast, or more out of the habit due to not wanting my medications to upset my stomach. And for the post part it is usually cereal. Sometimes I've bought cinnamon rolls, or made muffins etc. But I am a cereal person, and I rarely ate cereal as I kid. So, that is quite funny and odd now.
Just about every day, I take a "break" about 4PM, and sit down with my pups, one on each side, to watch part of a movie, before time to cook dinner around 5:30PM or so. It is a habit, that I've kept for the most part, unless something takes me away from the house, or I am sick, but most of the time, at 4PM I am with those two pups and on our sofa for about an hour or so.
I always 'Pay" my bills on the 3rd of each month. That is almost "religiously". Unless something is strange as far as how that day falls in the month or so forth, I pay bills every month on the 3rd.
I ALWAYS have a list, my coupons, and my reusable bags when I shop. Never do I go without the very least my reusable bags. The list and coupons are there about 99 percent of the time also.
Every night without question, after we eat dinner, which by the way, is on two of our very nice wooden TV trays in our living room, and we "I" watch the "Nightly News". If the news happens to not be one due to a ball game etc, it just messes up my entire evening. I want to see the news, at that time. It is always on Channel 5 here, and up until "Bryan Williams" had his stuff happen, I always preferred to watch him, another habit.
I NEVER DRY most of my "good clothes" in the dryer. I always hang them on hangers, and let them air dry in the house. Jeans and all. I don't want anything pulled out of shape, or fading, or wrapped around anything, so I never dry my clothes other than on hangers.
I absolutely, unless I am too ill, do some type of writing daily. Whether it is on my blog, Facebook, on my book I am writing now, or even sometimes in an email to a friend, I write daily. I also always as a habit try to do at the very least ONE thing for advocacy. I try and it is definitely a habit, that I do at least one item, and usually it is several a day for advocacy.
I for the most part have a habit of being off the computer by mid afternoon. Unless something is very important, that is when I stop my "computer stuff", do my house hold cleaning, run errands and so on. But by about 2 to 3 PM, I am off the computer.
IF I bake something, which also a habit, I do without fail at the least 3 times a week. I always bake in the morning early. I get that done, and as whatever it is bakes, a cake, pie, cookies, brownies, crumb cakes, or whatever, I bake very early in the morning.
I am in the habit of if there is a shower curtain it must be pulled all the way out to dry. Now with my "glassed in shower" I ALWAYS spray it with shower spray, and open both doors all the way so they will dry out, without fail.
I cannot stand anything on my area rugs. We have wood floors, so we have large area rugs. If there is the least bit of anything on them, I vacuum without fail. I hate seeing those carpets with any thing on them such as lint, crumbs, dog hair, etc.
I am a habitual believer in washing my car by hand. Unless the weather is too cold, or I am ill, I wash the car by hand. I've done that for many years and feel it is much better for the finish if it is hand washed.
I HATE a wet dish towel. I always have two or three out, and I switch them around, so the one that is with the dish drainer is dry. It just irks me to pick one up and it be too wet.
I am in the "habit" of taking care of ALL of our medications. I feel if "I" don't call in refills, or do them through the computer etc. they will not get done correctly. So, I always take care of medication refills, I always do any banking to be done, I always pay the bills, and those are things that I've done as a "habit" all of my grown adult life.
I am in the habit of sending "snail mail" greeting cards to family. I send some online to online friends. But, when it comes to close family, I believe in taking the time to go, pick out the card special for that person, and writing in it to let them know I am thinking of them, and send those snail mail.
I also made it a habit that every year without fail I write a "Christmas letter". It goes out with our snail mail cards, and each year for as long as I can remember I've sent a letter telling others about the past year and what ever I happened during that time.
My "habits" are many when it comes to the routine things in life. It seems since I had a very difficult time when I was a young adult, I have been the "take charge" person in any relationship. I DO it, because whether it is paying a bill, making a doctor visit, buy groceries, and that includes my Mom's things also, I am the one that is in the habit of, I do it. As I said, even with Mom's bills, and anything with paperwork, or making appointments to see the doctor, whatever she has that needs to be done, I am usually the one who takes care of it. I had mentioned above about have issues when I was a young adult. Back then I had two very abusive relationships. One not so much, physical, but more emotional and mental. The 2nd one turned out to be an abusive drama for many years in all ways. From mental, emotional, physical, to not paying bills, or helping to support myself and the 2 kids (I worked full time so usually my own paycheck paid the bills), because the person I was with back then could not keep a job, or spent his paycheck before he even came home with it and so forth. So, at a very early age I decided I would be the one that took charge of most everything that is involved in daily life, from paying bills, to even planning a vacation, I did it myself.
So, creature of habit, yes. There are many other things. I always read on my "new diagnosis" or a "new medication" when that happens. One "habit" that began when my now husband and I first got together over 10 years ago, we without fail, always buy a "Sleigh Bell" Christmas Ornament every year. In fact, we have bought them from the exact same place, and I believe we have at least 11, if not 12 including this past Christmas. No matter what else is going on during the holidays, it is definitely a "traditional habit" that I make sure we get the Christmas Sleigh Bell Ornament by Wallace in fact every year and it comes from a small store in all places Kent, Washington. The first one we bought, we drove down to the actual store and picked it out. After that we moved, so I've had to order them, but it is another one of those wonderful habits, that is a memory maker for the years to come.
Cure Click And You! RA Clinical Trial for a "biosimilar" somewhat like Rituxan - Could You be the next "winner" in the clinical trial Race?
TEXAS in the San Antonio and Austin Area will be participating!
The purpose of this study is to compare the proposed biosimilar study drug rituximab (GP2013) against a standard approved treatment rituximab (Rituxan®) to see if the study drug is as safe and effective in patients with rheumatoid arthritis.
For more General Information" about Clinical Trials see this link:
https://share.cureclick.com/r/29oy79A/about
The purpose of this study is to compare the proposed biosimilar study drug rituximab (GP2013) against a standard approved treatment rituximab (Rituxan®) to see if the study drug is as safe and effective in patients with rheumatoid arthritis.
The currently recruiting trial listed on CureClick for
rheumatoid arthritis is a clinical study for a biosimilar medication. We
have received several messages about this trial so we wanted to post
some additional information:
According to the FDA, “Biosimilars are a type of biological product that are licensed (approved) by FDA because they are highly similar to an already FDA-approved biological product, known as the biological reference product (reference product), and have been shown to have no clinically meaningful differences from the reference product.”
For this trial, one group will be given the currently approved and
available medication Rituxan® (rituximab) and the other will be on a
biosimilar version of rituxumab. Neither group will receive a placebo.
The goal of the trial is to see if the study drug is as safe and
effective in patients with rheumatoid arthritis and attempt to show it
has no clinically meaningful difference to the reference product
(Rituxan®).
MORE ABOUT THE STUDY FROM THE SPONSOR:
The purpose of this study is to compare the proposed biosimilar
study drug rituximab (GP2013) against a standard approved treatment
rituximab (Rituxan®) to see if the study drug is as safe and effective
in patients with rheumatoid arthritis.
- The study drug (GP2013 and Rituximab) is administered by IV Injection (IV).
- At least 174 people have already taken this drug in clinical trials
- All study related medications, analysis, hospital visits and procedures are free
Eligibility Criteria:
Participants must:
- be at least 18 years old
- have been diagnosed with rheumatoid arthritis for at least 6 months
- have had inadequate response or intolerance to DMARDs (disease-modifying anti-rheumatic drugs) and 1 – 3 anti-TNF (tumor necrosis factor) therapies
- have received methotrexate for at least 4 months with 25 mg/week as the maximal dose
Participants must not:
- have significant liver disease, or congestive heart failure
- be taking a high potency of opioid analgesics (e.g. methadone, hydromorphone, morphine)
For more information about the study, please visit the link provided to you by your Ambassador.
For more General Information" about Clinical Trials see this link:
https://share.cureclick.com/r/29oy79A/about
Friday, April 3, 2015
#HAWMC April 3rd, 2015 & My Own Experience with "Random Acts of Kindness"...
#HAWMC - WEGO Health
Last year March 2014, the 26th day to be exact, I received what was I felt the most incredible “act of kindness and compassion” that I had ever seen or received.
I was in Washington DC, as a part of the Annual Summit “on the Hill” with the Arthritis Foundation. It was on the 26th, we had officially ended the Summit, and I was awaiting the arrival of my Mother-In-Law, whom I had never met. Even though we (my husband and I) had been together for 10 years, I had only gotten to know her through call, emails, and so forth. I was also awaiting the arrival of my spouse. He was going to be going to the Dallas-FT. Worth Airport, to board a plane and come to DC to join me. We were considering this also a vacation, since I had never been to DC before; so all of it was something we had looked forward to for many months.
About noon there on the East Coast, I received what seemed like several “emergent” cell phone calls from my daughter. So happened I had been outside standing in front of the Hotel there in DC. waiting on my Mother In Law to pick me up. My spouse, Jim was going to arrive a bit later in the evening, so she was going to take me to her home, and let me get some rest.
As I went into the lobby again, wondering why it was taking her “Hilda” so long to pick me up. But, in the same time frame, I had gotten 5 or 6 calls again, from my daughter. So, I went into the lobby a bit further, to call and be able to hear. My daughter began in a very frantic voice, also hysterical, telling me that Jim, my husband had been in a very severe car accident in Dallas on his way to the airport to fly out. Well, I almost fell to pieces, but was trying to get hold of the trauma team in Baylor Hospital where he was taken and find out more about his injuries.
At that moment, time along with myself, seemed to “hit the floor” literally. My knees buckled from underneath me, and I began to probably scream, people all around waiting to go to their planes etc, hearing my cries. One gentleman, who had also been in my “group” for the entire Summit, Chris Nieto happened to be standing there, and heard what was going on. Thank Goodness for that man. He took it immediately as he truly felt he needed to help me. He knew whatever news I had just received was not good at all, and as I tried to explain, I fell to pieces. I asked him to speak with the doctor at Baylor who was on the cell phone with me. I just was listening to this list after list, of things that were “wrong”, broken, out of place, from a broken shoulder, to a “broken back”. I nick in an Aorta, almost every rib broken, and again as he wrote down each item the list began to grow further into a place I felt someone had just pushed me off of the highest cliff known to man. Chris finished up on the phone, got me some water, all of my group gathered around, and Chris looked at me and asked me what I wanted to do.
I said “I need to go to Dallas”… ASAP, yet that moment I had no idea whether Jim would live or die before I even got on the plane. Chris told me he would be right back. In a few minutes him and the “Grassroots Manager” over the Summit for the Arthritis Foundation. Laura came to me and handed me the information and a “fax” I believe for me to go get my ticket and be on the plane headed to Dallas within a few hours. No hesitation, and within an hour I and Chris Nieto who lives in the Austin TX area, was with me, headed to the airport there in DC, so we both could fly into DFW (Dallas/Ft. Worth International Airport). He happened to be catching a connecting flight to go to another Arthritis Foundation sponsored trip in Colorado, which was for the Juvenile Arthritis Kids and their annual get together. He stood with me every step of the way. He made sure that I got my bags where they needed to be, got my ticket, and got me on the plane. In fact, he went and asked if I could be boarded ahead of some just due to the fact I was honestly in total shock at that time. I really could not at that moment tell you ALL that was going around and around in my mind.
Chris got me safe and sound to Dallas, helped me make sure I got my bags, and made sure I got hold of my son, who was on his way to pick me up at the airport. Then he had to get on his connecting flight, and as we parted ways, I just cannot tell you in words how much that dear man did for me. The kindness, compassion, the selflessness, all of the assistance and making sure I didn’t just totally collapse, was purely a miracle. And he was my walking, talking miracle for those first horrid hours.
He is truly a man of courage, generosity, of giving, of making sure everyone else is “lifted up” and are recognized for their achievements. He also has a dear wife, and two beautiful girls, one of which was diagnosed at only 9 MONTHS old with Juvenile Rheumatoid Arthritis. He helps at just about every event for the AF; as well as recently sits on their board of directors. Again, there is no way I could ever repay the incredible gift of help from Chris, and also the generosity of the Arthritis Foundation to fly me home immediately, no questions asked. I was on my way back to Dallas and that was just how awesome the foundation is and always will be.
I am so very proud to be one of their “Platinum Ambassadors” for 2014. In fact, since illness and some family issues kept me from going back to the DC Summit this past March, I received a box filled with a plaque recognizing my “devotion” as going the extra mile for them. I also received a great T-Shirt, which I wear proudly today, and an awesome reusable bag, plus some “buttons”, a “stress ball”, and our latest “Ambassador Outline” for all we want to do in 2015. Again, I’ve been able to keep up with Chris and his family through Facebook, and again I am still speechless when it comes to the pure and wondrous gift Chris gave to myself, and I know he would do the same for anyone who needed his help. It draws tears to my eyes of joy each time I recall just how wonderful of a man he was then, and how he shall continue to make his own mark against the horrid Arthritic Illnesses. Rhia Steele 4/3/2015
Sharing More About My Pathway to being An Autoimmune "Voice" Activist, doing Advocacy & being An Ambassador for AI's - A Long Journey...
I am WAITING "patiently". I am supposed to get a huge "suprise" goody
box from the Arthritis Foundation. Since I was not able to attend the
Summit, they are sending me my "Platinum Ambassador" certificate, along
with some other things from the Summit!!! Hopefully another reusable
bag, so I can "advertise" plus maybe a T-Shirt smile emoticon
I hope. We got them last year, so maybe that will be with some of the
rest of it... I will take a picture after I get it so everyone can see
what kinds of things I got.... I am still so totally bummed about not
getting to go to DC I pray and pray, I will get another chance in the
future! :):) I certainly hope so... being in DC for me, is the ultimate
"advocacy" way to get your message across... I did last year in 2014...
and even though I didn't get to go physically this past time, my heart,
soul and spirit were there and I was "tweeting", blogging and posting
everything I could to help spread the word!
I will have more and better pics in a bit.. my battery on my camera needs charging. But, here is a portion of the awesome box I received yesterday from The Grassroots Manager at the Arthritis Foundation!!!! Even though I did not make it to DC this year and be awarded my plaque in person, I hope next year to go one way or the other... I was so surprised and honored to receive this!
I will have more and better pics in a bit.. my battery on my camera needs charging. But, here is a portion of the awesome box I received yesterday from The Grassroots Manager at the Arthritis Foundation!!!! Even though I did not make it to DC this year and be awarded my plaque in person, I hope next year to go one way or the other... I was so surprised and honored to receive this!
- I am going to post a photo a bit later of ALL of my incredible things I received from the Arthritis Foundation. I was so thrilled when it came yesterday afternoon! I received my "Official Plaque" for being a 20014 "Platinum Ambassador", a new T-Shirt from the new Summit, several buttons I can wear, a "stress" ball, an awesome "reusable" bag!! This one has zipper pockets, and is lined very well in heavy plastic, with the whole logo on it from the summit. It is really awesome! I also got the brand new 2015 Ambassador "Too; lit", which is so nice. I have it downloaded onto my computer, but this one is so cool. It is in a beautiful bound booklet, with all of the "colorful" logos etc used this year for the Summit. By the way, it is "green" this year and so it my new T-Shirt! I am just so happy I received it with a beautiful note written by the "grassroots manager" who is just a real sweetheart! Laura has been almost like a "mentor" to me in so many wonderful ways. Also, last year along the way, we became "friends". I learned a great deal about her on more of a personal level and we shared things back and forth over the year about the Arthritis Foundation, but also what we had going on more about our own lives. I have truly been blessed to have her kind of take me under her wing. She was the person that helped to get me home, in the last years Summit of 2014, when Jim had the severe and very bad car accident at the last of the Summit. Her and Chris Nieto will always remain extremely special to me on many, many ways. I thank the Lord for them each day, and all of the help. compassion, support, and so much more they gave to me during that "trying time". Those times when life can all of a sudden within a breaths space throw a curve ball at you 90 MPH, & hit you right in the gut with full force. I am so indebted to both of them, plus the Arthritis Foundation; along with several others that gave me the support I needed when literally my knees buckled under the weight of way too much "life tragedy" when I least expected it. Pam Gill from the Central AF also was a huge help, and so many of the advocates, and my "family here on FB" were here day after day during those trying times when he was in the hospital for over 3 months. I never thought our lives would ever see anything
"normal" again. As I said before, and we continue to see it, a "new normal" whatever that might be in our lives now. Denise Tekell you have also been here to listen, encourage, support, & be such a very dear, dear friend even though you are going through a very difficult time in your own life. I admire you so very much, for the strength you show, for your tenacity to find your way through such again a time when life seems to be so turned upside down for you and your family. Yet, you always have a smile on your face, no matter the amount of pain, and of fatigue, & all kinds of health issues you are dealing with, you have a kind word for us no matter what life is also pitching at you also, at a pace so fast, sometimes we find ourselves almost unable to "dodge" it. So many of you here have lifted myself and Jim up in thought, positive light and prayers. I hope EACH and everyone of you (and you know who you are) always KNOW and TRUST we are so blessed and so very grateful to have you on our fighting side of life, when it decides to deem a rapid punch when you least expect it. As I finish up "HOPEFULLY" over a YEAR of the NIGHTMARE from the Sjogren's and Losing ALL OF MY TEETH to that horrid disease, and Hope for these "mini titanium pins" will continue to help give me the added support I so desperately need in order to hold these bottom dentures in place, only to now fight another battle of a "new pain" - well it is not so "new" but much worse than it had been in my lower back, hips and legs. I am still not so sure my hips are also a part of the problem. In fact I am going to call my orthopedic surgeon and make an appointment to see him hopefully ASAP and see about having my hips injected again very soon. So, once again I face a "new frontier" in this battle of autoimmune illnesses. They can cut you down much faster than you can get up all too often... more later...
I am sure (Jim and I in fact talked about this yesterday) that at times people probably wonder If I have lost my mind.... Well, I didn't have a whole lot to lose, since over the years many things have certainly waxed
and waned me in life. At one time, before I got into the "advocacy"
work, and before I got "chronically ill"... my "voice" in my writing and
some volunteer work was for "battered and abused" women (men kids
etc)... but mainly women. Due to a couple of events that happened to me
as a teenager, that I never spoke of here in this town at all, along
with the living hell of an extremely abusive marriage that I stayed in
WAY TOO LONG, before I finally decided to leave the entire state of TX
behind... and find "peace" somewhere else.. which at first I thought was
Lancaster CA, then things happened, I had to move back to TX, and again
put up with the mental, emotional and physical abuse of someone who was
"supposed to love me".... I had a knee operated on... and when it was
well enough, I moved to Seattle WA... there of which I thought I had
found my "life"... and I did in many ways. I loved my job there, and I
was basically more "healthy" that I had been in years and years. Then I
was struck down with yet some more abuse, that I got out of very
quickly. It was not long until I began to I am sure now have the sign
and symptoms of what I now know is the Lupus, RA, Sjogrens and so forth
... so due to life's changing path, just as a river can change course my
life led me back here, to where I grew up... and at first I was
angry... I was ANGRY AND MAD AS HELL! To be quite honest. That was the
last thing I wanted to do. But I did miss my Mom and kids... thus coming
back was a good thing... As far as the "abuser" he wound up in jail for
a long time right after me moving back. So, that kept him out of my
life... and after that, he has left me, (us) alone for the most part.
Thank goodness. Back before I moved to Seattle, due to mainly "hiding"
to keep from being abused (I was 40 at the time) many thought I was the
one insane, on drugs, etc... no one was ever told the truth at that
time... i hid it, kept it inside because I knew no one would believe me
then. They would assume and did, that I was the one with "the problem".
Later it all came out, and when that happened it stopped many years of
gossip, pain, and others thinking I was nuts. Anyway, My advocacy,
writing, poetry and so forth for many years had always been about the
abuse, how to get out, how to get help, and so on... then it took a new
twist after I became so chronically ill. During my "research" of what
all of these "diseases" were doing to my body, I saw much that "called
me into" the activist work. I wanted to TELL THE ENTIRE WORLD that I,
THAT WE... all of us NEEDED ASSISTANCE.. we needed a cure, a reason why,
MORE RESEARCH, more of everything, and I so wanted to be a part of that
change.... thus my own illness led me to this road of being an
Ambassador... and the challenge of trying to "make a difference"... but
when the ordeal with Jim happened a year ago, things truly changed
again... what many DO NOT SEE, are the days, times, moments, sometimes a
week or two, that I DO FALL APART... I do want to just say to hell with
it and quit... I don't want to make another step, see another doctor,
take another pill, and at times I am truly SICK OF BEING SICK FOR ONE...
AND #2 i am SICK OF ALWAYS TALKING ABOUT BEING SICK!! So, I like you
try to hold onto one moment, one hour, one day, one month... and step
forward sometimes to an abyss of the unknown... and allow "faith" to
lead me where I need to go... Even now, I know in my heart, if I ever
intend of being SERIOUS about WRITING my BOOK, I am going to have to
"cut back" on some of my other advocacy work... as much as I never
wanted to even think that, much less have to honestly deal with it. I am
under way too much "pressure and stress"... I've always been a "yes"
person... someone asks me to "help" and of course I am always willing
and ready to step up to the plate and do whatever it takes... but
between my own "all terrain" keeper of our domain, in other words,
taking care of the WHOLE HOME, all of it... and then so much with Mom,
that she honestly cannot do on her own... and my own illness, I am still
way too overloaded to find the time to write, to blog, and to do the
other things I feel that are also my "calling"....So, as much as I don't
want to, I am going to have to back out of some of the activism for
now. I can always pick it back up later.... but for now, I feel my work
on my book, our home, and Mom's things... as well as my own health has
to take precedence over some of the other things I have been
participating in... So, as in the next couple of days, I make that
decision of what to "hold onto" for now, and what to "bow out of" for
now... pray I am making the right decisions and I am doing what "His"
Will is, not just my own... so this is a perfect "holiday" to "roll away
the stone"... and find out what is "truly meant for me to do over the
next year or so"... I pray and hope for guidance, because Lord knows I
may mess it up on my own.... Hugs back and much love.
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