YUCK!!! I first of all, have a very nauseated stomach and now am getting a stupid headache. It was almost like a "de-ja-vu" for me just a bit ago. I had this overwhelming feeling that I had been in that exact "space and time" before. Well, I had. Years ago, when my migraines began, it seems I would have these stupid things either on Friday or Saturday night!!! It seemed to never fail, that when Friday came and I was looking forward to either going out to dinner or dancing with friends, next thing you know, I'm headed for the ER with a very severe migraine. Most of the time, nothing would take those away, especially when I got badly nauseated also, but going in for IV fluids, some type of strong pain killer, morphine, back then they used Demerol for that type of pain. Then in a few hours it was home to hopefully keep the stupid thing at bay so I could still have a good weekend. Anyway, when I first got out of bed, my stomach was already very upset, and then the headache began to come on quickly also. And it is FRIDAY! Of course now, I am no longer able to "work" outside my home, so the circumstances are a tiny bit different. Yet, I really NEED TO GET MY MOM'S TAXES DONE!! And the plan was for me to do a few things online, then do her taxes and get that out of my way. So, I took some Promethazine, my meds for pain, etc and am trying to make sure I get my few posts in, and hopefully finish those taxes or at least get the most of them done, so I can go to the sofa for the rest of the day. I can tell this is going to be "one of those bad headaches" and my only option is on the sofa, and to remain still as possible so it will finally go away...
Also, I FINALLY HAVE THE APPOINTMENT NEXT WEEK (Well both of them) one to have both hips injected on Tuesday here by my Orthopedic surgeon. Then I have to go to Dallas next Thursday (have to be there at 7AM) not looking forward to that drive in Dallas at that time of the morning. My pain doctor finally is going to inject both sides of the last vertebra down by my tailbone. He thinks at least a portion of the horrid pain I've been having is coming from there. I have a bulge of a disc there, plus probably a great deal of inflammation which waxes and wanes so some days it hurts much worse than others. But, I feel my hips are still a part of the problem. I had them both injected about this time 2 years ago. That seemed to help, SO I am hoping I can continue to do without hip surgery. Anyway, between the both of them, I am keeping the faith for relief. Plus if those work then we know for sure, where the real problems are coming from.
BUT< what truly SUCKS! Of course Jim can't drive at all, and my Mom could never drive in Dallas at all... she barely gets back and forth from the market, bank and home here in this small town, much less Dallas traffic. Well, they will have to give me a bit of something to put me out or to the place as I used to call it (" don't give a damned medicine in my IV)... I know this routine like the back of my hand. Plus I know they "think" my husband will be there with me, to possibly drive me home. Well, he could "help" some if I needed help... BUT usually with that light of meds to put you asleep for a 10 minute procedure, you are wide awake, drinking juice or something before you go anyway. So, that is a drawback of having Jim not be able to drive, plus Mom can't and no one I know here close enough that could drive me back and forth to Dallas on a weekday... So, we are going to have to be a bit "creative" in making sure they don't see me being the one driving myself home. I know I won't have a problem at all. As I said, you really don't go out for long, and that med wears off quickly especially since I've had to go through this several times.... so that is my "hectic" schedule for next week, along with possible RAIN and Thunderstorms for the next 10 DAYS!!!
#HIPNeckSteroidinjections
Friday, April 10, 2015
"Comfort Food?" Sweet, Salty, Tart, Citrus, Beef, Chicken, Pork.. Chinese, Tex-Mex, Hometown American, French, ORA is it another? WEGO #HAWMC
#HAWMC
WEGO Health Writer's Challenge April 10, 2015
Friday and What We like for "Comfort Food?" Do I cook, bake, and make most meals at home "from scratch?" The answer is YES! I am a home grown Texas/Czech background, and my tastes very widely. Fro, made here in our town "Klobase" (usually half pork and half venison with LOTS of black pepper) stuffed into a casing and smoked in a smoker, to Poppy Seed rolls, Kolaches (sweet pastry dough with prune, cream cheese, apricot, or other types of filling put in a little "well" in the middle of the dough. Then allowed to rise and then bake. Just to name a few down home "Czech" favorites around my home town.
I've been one that LOVES to bake sweets all my life. From fudge, to "no-bake fruitcakes". From Red Velvet Cakes, to lemon custard pie, you name it I love to bake it.
I also am quite the user of a "slow cooker" or "crock pot", depending on what name you choose to call it.
So, if I had to pick a favorite that I cook, and consider "comfort food" is a bit difficult for me. I LOVE sweets so well, and usually if I am stressed or upset, the first thing I think is, cookies, pie, cake, or just about anything sweet around.
But, my home made all from scratch slow cooker low in fat, carbs and calories has to be my favorite to cook, and what I would say is my favorite "comfort food".
My chili contains very little "beef". I know that sounds nuts, but I use "ground turkey" for a large portion of the "meat". Then I usually buy a very small portion of beef, usually something like "stew meat" or a piece of a cheaper piece of beef, because I know it will definitely tenderize by the time it is ready to eat. I also for the mot part have cut down a large amount of the "tomato" base for my chili. Both my husband and I have problems with GERD, thus one of the reasons I first of all make my own chili, and enough for several meals to freeze, plus I can keep up with the calorie count in the portions making sure I put in it, what I want to taste it like when I'm through.
I also rather than so much "meat" of any kind put LOTS of different types of beans in it. Quite often I'll have some of my pinto beans in the freezer, and I use some of them in the chili But, I also pick up about 10 cans of different types of beans to go into it. I love the very dark kidney beans, and the light ones also I also use a few cans of black beans, red beans and if I don't have any of my own cooked, then I add a couple of cans of pinto beans into the mix. It varies, but usually there are on the average of 10 cans of all different types that truly give it that thickness and hardiness that chili needs. Plus I rinse all of them off to rid a great deal of the sodium in them, plus I don't want the juices in those cans to "mix" with the taste of the chili, Then I add several different types of steak sauces into it. I try to limit myself to 1 can of either tomato paste, or better a can of roasted tomatoes in it. From the couple of steak sauces, to the tiny amount of tomato, then I put some white or yellow finely chopped onion into it, a bay leaf, a good deal of chili powder (we like a lot but it is up to your preference) as far as how much to use. What I do is start out with a bit less of all of my spices. I allow the entire thing to come to a good boil in the cooker, then add more as it cooks. There is cumin it in, a bit of paprika that is more for color than taste, LOTS of black pepper, some sea salt, but I try and stay away from as much sodium as possible without ruining the flavors of the chili. Sometimes I put some chopped garlic in it, but just a tiny amount. I don't want to overpower the other spices with too much garlic.
As it cooks, if it seems to be too thick then in small amounts I add very hot water to it, then wait and watch before I add more.
My very favorite way to eat it is usually the next day, after it has cooks for 8 t0 10 hours in the slow cooker, with corn chips, mustard and a bit of grated cheese on it. If you are not familiar with "Frito Chili Pie"... probably more of a Southern/Texan sort of dish, then you are missing out for sure.
Cooking as a whole has always been another one of the ways that I tend to get rid of my stress. Once I'm in the kitchen, then my attention is completely focused on whatever I am preparing. There are many great memories surrounding me from years past when I am baking or cooking. We always had a huge dinner at my Grandparents home all the years I was growing up. Most of the cousins were about the same age, so Christmas, Thanksgiving, Easter, and others give me that special feeling as a child of the love that was shared and prepared in that kitchen.
My Grandmother who was full Czech, took care of me the years before I went to school. So, I spent lots of time in the kitchen with her, watching, then getting old enough to help and those memories also hold a very special place in my heart. Even though she has been gone now for about 12 years, the special times in her kitchen will always remain vivid in my thoughts.
#HAWMC
WEGO Health Writer's Challenge April 10, 2015
Friday and What We like for "Comfort Food?" Do I cook, bake, and make most meals at home "from scratch?" The answer is YES! I am a home grown Texas/Czech background, and my tastes very widely. Fro, made here in our town "Klobase" (usually half pork and half venison with LOTS of black pepper) stuffed into a casing and smoked in a smoker, to Poppy Seed rolls, Kolaches (sweet pastry dough with prune, cream cheese, apricot, or other types of filling put in a little "well" in the middle of the dough. Then allowed to rise and then bake. Just to name a few down home "Czech" favorites around my home town.
I've been one that LOVES to bake sweets all my life. From fudge, to "no-bake fruitcakes". From Red Velvet Cakes, to lemon custard pie, you name it I love to bake it.
I also am quite the user of a "slow cooker" or "crock pot", depending on what name you choose to call it.
So, if I had to pick a favorite that I cook, and consider "comfort food" is a bit difficult for me. I LOVE sweets so well, and usually if I am stressed or upset, the first thing I think is, cookies, pie, cake, or just about anything sweet around.
But, my home made all from scratch slow cooker low in fat, carbs and calories has to be my favorite to cook, and what I would say is my favorite "comfort food".
My chili contains very little "beef". I know that sounds nuts, but I use "ground turkey" for a large portion of the "meat". Then I usually buy a very small portion of beef, usually something like "stew meat" or a piece of a cheaper piece of beef, because I know it will definitely tenderize by the time it is ready to eat. I also for the mot part have cut down a large amount of the "tomato" base for my chili. Both my husband and I have problems with GERD, thus one of the reasons I first of all make my own chili, and enough for several meals to freeze, plus I can keep up with the calorie count in the portions making sure I put in it, what I want to taste it like when I'm through.
I also rather than so much "meat" of any kind put LOTS of different types of beans in it. Quite often I'll have some of my pinto beans in the freezer, and I use some of them in the chili But, I also pick up about 10 cans of different types of beans to go into it. I love the very dark kidney beans, and the light ones also I also use a few cans of black beans, red beans and if I don't have any of my own cooked, then I add a couple of cans of pinto beans into the mix. It varies, but usually there are on the average of 10 cans of all different types that truly give it that thickness and hardiness that chili needs. Plus I rinse all of them off to rid a great deal of the sodium in them, plus I don't want the juices in those cans to "mix" with the taste of the chili, Then I add several different types of steak sauces into it. I try to limit myself to 1 can of either tomato paste, or better a can of roasted tomatoes in it. From the couple of steak sauces, to the tiny amount of tomato, then I put some white or yellow finely chopped onion into it, a bay leaf, a good deal of chili powder (we like a lot but it is up to your preference) as far as how much to use. What I do is start out with a bit less of all of my spices. I allow the entire thing to come to a good boil in the cooker, then add more as it cooks. There is cumin it in, a bit of paprika that is more for color than taste, LOTS of black pepper, some sea salt, but I try and stay away from as much sodium as possible without ruining the flavors of the chili. Sometimes I put some chopped garlic in it, but just a tiny amount. I don't want to overpower the other spices with too much garlic.
As it cooks, if it seems to be too thick then in small amounts I add very hot water to it, then wait and watch before I add more.
My very favorite way to eat it is usually the next day, after it has cooks for 8 t0 10 hours in the slow cooker, with corn chips, mustard and a bit of grated cheese on it. If you are not familiar with "Frito Chili Pie"... probably more of a Southern/Texan sort of dish, then you are missing out for sure.
Cooking as a whole has always been another one of the ways that I tend to get rid of my stress. Once I'm in the kitchen, then my attention is completely focused on whatever I am preparing. There are many great memories surrounding me from years past when I am baking or cooking. We always had a huge dinner at my Grandparents home all the years I was growing up. Most of the cousins were about the same age, so Christmas, Thanksgiving, Easter, and others give me that special feeling as a child of the love that was shared and prepared in that kitchen.
My Grandmother who was full Czech, took care of me the years before I went to school. So, I spent lots of time in the kitchen with her, watching, then getting old enough to help and those memories also hold a very special place in my heart. Even though she has been gone now for about 12 years, the special times in her kitchen will always remain vivid in my thoughts.
#HAWMC
Thursday, April 9, 2015
A "Daunting Challenge in Life" WEGO Health Writers Challenge April 9th, 2015
I could start off with a couple of periods in my life, that offered up a "challenge" or actually more than one, that truly put me into the realms of being not so sure I could "last" through that time.
I had a couple of those types of circumstances at 25 years old, and having to have my face "fixed" mainly my upper lip from a 4 wheeler accident that honestly I am here today wondering why I even made it? Another story for another time.
Also, at about 40 years old, suffering through a heart attack, by myself during the very beginnings of it, as I was also going through a horribly abusive relationship, him leaving completely, and the decisions that I had to make in order to basically "stay alive". Again, another story for another time.
There was the time at 50, I spent well over 6 weeks in two hospitals, and to this day, I don't think even my doctors knew exactly why I got so ill, in such a very short amount of time, and went through at least 4 surgeries, and was told to "call my family" on one of them, because they were not sure what the outcome would be. Once more for another time.
Then, there is what happened a year ago March 26, 2014. I had been in Washington DC, with the Arthritis Foundation, and their annual "Summit on Capitol Hill" for 3 days. I had found out very close to the date it was actually going to happen, and sent in an application for a "travel grant". I figured for one, I was too late to even get anywhere as far as a travel grant, plus at the time my health had been waxing and waning with Lupus and several severe flares I had been having at that time.
Yet, as "fate" would have it, I DID get the TRAVEL GRANT, and I was accepted to actually to go Capitol Hill, face the very Congress I had always wanted to face, and tell my own story, along with the story of others. I felt if I could do that, I could make a huge difference in how the nation, the world, and those in Congress "viewed" Autoimmune and Arthritic Diseases. Thus, it was a dream come true and I was in shock for a day or so, in disbelief I got the award to go.
Yet, I did. And even up until the very wee hours of Monday morning, April 24th, 2014, I was not sure I was truly well enough to go. But, a very good physician at one of our local Urgent Care Centers, happened to have Lupus himself. So, he gave me the medications I needed, along with an injection of corticosteroids, and I was up on my feet and able to make that flight. I was elated.
My spouses Step Mom lives very near DC, and since I had never met her, plus my husband had not seen in her over 10 years, he was going to fly out on that Wednesday the 26th of March, to meet me. We were to visit and also have a vacation until the Following Sunday, before flying home. It was kind of a trip of a lifetime for both of us. I definitely loved what I saw on Capitol Hill, and had felt like the trip had really given me more hope, that what I was doing as an Ambassador, activist, and advocacy voice, truly would make a difference.
On that Wednesday, my husband was to drive to Dallas, to the DFW Airport. It was about a 65 to 70 mile drive, before flying out. I had been finished with my own items to do with the Summit around noon that day, so his Mom was to come by the Hotel and pick me up. He was to get into DC around 7PM or so.
Just about the time it was close to time for me to be picked up by my Mother in Law, my cell phone began to ring, ring, ring, and ring. I had been outside of the Hotel, it was very noisy, so I really had not heard the phone ringing, until I walked back in. After seeing the number of calls from my daughter, I rang her back right away. Her voice sounded terrified, and as she said, Mom, Jim's (my husband) been in a very severe car accident in Dallas. He is in the ER at Baylor Hospital in Dallas, and the doctors need to talk to you ASAP! I almost lost it then, but I held myself together long enough to make that phone call. As I listened to the "voice" of the doctor over the phone reading out this "LIST" of things wrong with Jim, I just sunk to the floor and was sobbing uncontrollably. So, one of the kindest men I've ever known, had been in our group during the Summit, heard me. He came over and asked about what was happening, and I asked him to please take the phone and write down what the doctor was telling him. Most ribs broken, a very severe back injury from possibly C-7 through T-7, broken shoulder, concussion, a broken leg, a whiplash, a "nick" in the Aorta, and the list continued to seem endless.
About that time, my Mother In Law, came up to tap me on the shoulder. She of course didn't know any of this at the moment, so she thought I was crying because I was happy she was there to pick me up. I had to look this woman, my Mother In Law, that I had never met until that moment, in the eyes and tell her, that her son, was in critical care, headed to ICU in Dallas due to an 18 wheel tractor trailer "running over him" in Dallas. By this time, the woman who I just owe everything to from the AF had already spoken with Chris (the man helping me on the phone with the doctor), and they had made flight arrangements to send me to Dallas within a couple of hours. I am still in such awe and have so much gratitude for them, and her. I still feel I owe them so very much, for their kindness and generosity at that moment.
Basically, when I look back on it, the next 72 hours, I believe I ran off of shock, horror, dismay, and honestly I think I had truly become "dis-associative" in order to be able to "deal" with everything that needed to be done so quickly.
Needless to say, that date was just a year ago, this past March 26th. For almost this entire year, between my own ordeal with totally losing my own teeth to Sjogren's, Jim's long and laborious recovery, the doctors, bills, medications, therapy, the 3 months he spent in the hospital... all of the integral parts of him being partially parapalegic. He had been MY CARETAKER, before the accident. NOW, and probably possibly forever, I've had to become a caretaker for him, myself and honestly often my Mom, who will be 80 years old this August.
I've had many, many people ask me how I have been able to "cope". Truthfully, I am not even sure if I have. There are days, moments, weeks, that I feel so totally trapped, others I feel we will conquer, and times I am so ill myself, like I was last year right after his accident, I came down with double pneumonia. I had to do everything in my power NOT to have to go to the hospital. The doctor really wanted me to. Yet, I just felt if I could get well at home myself, then I could get things accomplished, that I would not be able to in the hospital.
Day to day, moment to moment, hours, weeks, months and now a year later, I'm not really sure if I am "sane", or if I've become insane. I've tried to take each step in stride, hoping for a better tomorrow, week, month, and years.
Yet, I am not sure exactly what to tell anyone in this situation other than, believe in yourself, try to take care of your own health as much as possible, accept others help when they offer it, or ask if you have someone that could help with some things. Try to stand tall, know that each moment, each step forward is one more to whatever a new "normal" will be. Also, keep hope and faith, along with asking others for prayers too, can be a huge help to be able to accept what has happened. You must finally in one way or the other truly "deal" with the issue, and then you can work on all of the other stuff.
Plus just that. Come to your own place that you must, you have to accept, "normal" as you knew it will never be again. You must find a "new normal"... and sometimes possibly several of "new normals" through out the process....
Rhia Steele April 9th 2015
I had a couple of those types of circumstances at 25 years old, and having to have my face "fixed" mainly my upper lip from a 4 wheeler accident that honestly I am here today wondering why I even made it? Another story for another time.
Also, at about 40 years old, suffering through a heart attack, by myself during the very beginnings of it, as I was also going through a horribly abusive relationship, him leaving completely, and the decisions that I had to make in order to basically "stay alive". Again, another story for another time.
There was the time at 50, I spent well over 6 weeks in two hospitals, and to this day, I don't think even my doctors knew exactly why I got so ill, in such a very short amount of time, and went through at least 4 surgeries, and was told to "call my family" on one of them, because they were not sure what the outcome would be. Once more for another time.
Then, there is what happened a year ago March 26, 2014. I had been in Washington DC, with the Arthritis Foundation, and their annual "Summit on Capitol Hill" for 3 days. I had found out very close to the date it was actually going to happen, and sent in an application for a "travel grant". I figured for one, I was too late to even get anywhere as far as a travel grant, plus at the time my health had been waxing and waning with Lupus and several severe flares I had been having at that time.
Yet, as "fate" would have it, I DID get the TRAVEL GRANT, and I was accepted to actually to go Capitol Hill, face the very Congress I had always wanted to face, and tell my own story, along with the story of others. I felt if I could do that, I could make a huge difference in how the nation, the world, and those in Congress "viewed" Autoimmune and Arthritic Diseases. Thus, it was a dream come true and I was in shock for a day or so, in disbelief I got the award to go.
Yet, I did. And even up until the very wee hours of Monday morning, April 24th, 2014, I was not sure I was truly well enough to go. But, a very good physician at one of our local Urgent Care Centers, happened to have Lupus himself. So, he gave me the medications I needed, along with an injection of corticosteroids, and I was up on my feet and able to make that flight. I was elated.
My spouses Step Mom lives very near DC, and since I had never met her, plus my husband had not seen in her over 10 years, he was going to fly out on that Wednesday the 26th of March, to meet me. We were to visit and also have a vacation until the Following Sunday, before flying home. It was kind of a trip of a lifetime for both of us. I definitely loved what I saw on Capitol Hill, and had felt like the trip had really given me more hope, that what I was doing as an Ambassador, activist, and advocacy voice, truly would make a difference.
On that Wednesday, my husband was to drive to Dallas, to the DFW Airport. It was about a 65 to 70 mile drive, before flying out. I had been finished with my own items to do with the Summit around noon that day, so his Mom was to come by the Hotel and pick me up. He was to get into DC around 7PM or so.
Just about the time it was close to time for me to be picked up by my Mother in Law, my cell phone began to ring, ring, ring, and ring. I had been outside of the Hotel, it was very noisy, so I really had not heard the phone ringing, until I walked back in. After seeing the number of calls from my daughter, I rang her back right away. Her voice sounded terrified, and as she said, Mom, Jim's (my husband) been in a very severe car accident in Dallas. He is in the ER at Baylor Hospital in Dallas, and the doctors need to talk to you ASAP! I almost lost it then, but I held myself together long enough to make that phone call. As I listened to the "voice" of the doctor over the phone reading out this "LIST" of things wrong with Jim, I just sunk to the floor and was sobbing uncontrollably. So, one of the kindest men I've ever known, had been in our group during the Summit, heard me. He came over and asked about what was happening, and I asked him to please take the phone and write down what the doctor was telling him. Most ribs broken, a very severe back injury from possibly C-7 through T-7, broken shoulder, concussion, a broken leg, a whiplash, a "nick" in the Aorta, and the list continued to seem endless.
About that time, my Mother In Law, came up to tap me on the shoulder. She of course didn't know any of this at the moment, so she thought I was crying because I was happy she was there to pick me up. I had to look this woman, my Mother In Law, that I had never met until that moment, in the eyes and tell her, that her son, was in critical care, headed to ICU in Dallas due to an 18 wheel tractor trailer "running over him" in Dallas. By this time, the woman who I just owe everything to from the AF had already spoken with Chris (the man helping me on the phone with the doctor), and they had made flight arrangements to send me to Dallas within a couple of hours. I am still in such awe and have so much gratitude for them, and her. I still feel I owe them so very much, for their kindness and generosity at that moment.
Basically, when I look back on it, the next 72 hours, I believe I ran off of shock, horror, dismay, and honestly I think I had truly become "dis-associative" in order to be able to "deal" with everything that needed to be done so quickly.
Needless to say, that date was just a year ago, this past March 26th. For almost this entire year, between my own ordeal with totally losing my own teeth to Sjogren's, Jim's long and laborious recovery, the doctors, bills, medications, therapy, the 3 months he spent in the hospital... all of the integral parts of him being partially parapalegic. He had been MY CARETAKER, before the accident. NOW, and probably possibly forever, I've had to become a caretaker for him, myself and honestly often my Mom, who will be 80 years old this August.
I've had many, many people ask me how I have been able to "cope". Truthfully, I am not even sure if I have. There are days, moments, weeks, that I feel so totally trapped, others I feel we will conquer, and times I am so ill myself, like I was last year right after his accident, I came down with double pneumonia. I had to do everything in my power NOT to have to go to the hospital. The doctor really wanted me to. Yet, I just felt if I could get well at home myself, then I could get things accomplished, that I would not be able to in the hospital.
Day to day, moment to moment, hours, weeks, months and now a year later, I'm not really sure if I am "sane", or if I've become insane. I've tried to take each step in stride, hoping for a better tomorrow, week, month, and years.
Yet, I am not sure exactly what to tell anyone in this situation other than, believe in yourself, try to take care of your own health as much as possible, accept others help when they offer it, or ask if you have someone that could help with some things. Try to stand tall, know that each moment, each step forward is one more to whatever a new "normal" will be. Also, keep hope and faith, along with asking others for prayers too, can be a huge help to be able to accept what has happened. You must finally in one way or the other truly "deal" with the issue, and then you can work on all of the other stuff.
Plus just that. Come to your own place that you must, you have to accept, "normal" as you knew it will never be again. You must find a "new normal"... and sometimes possibly several of "new normals" through out the process....
Rhia Steele April 9th 2015
Wednesday, April 8, 2015
My First "Victory" 25 Chapters in my latest book written and a huge word count over 50% finished!!!!
I
JUST officially HIT Chapter #25!!! In the latest book I am writing!!! I
now have 47,383 WORDS!!!! I am so elated. Much of it of course will
have to be gone through, spaced, and so on... going to take a great deal
of going over, and over.. and then going over it again to have it to
the "publication date"... But, having that much into "copy" for now is
exciting!! Jim just looked up the "typical" word count for a book such
as this, and it is between 80,000 to 90,000 WORDS. So,
I am at my half way or more point in the writing process... I have to
admit I HATE proofing!!! I get so tired of looking at it over and over..
so I always have Jim also proof it for me several times also. That way,
hopefully between the two of us, it is "readable" and makes sense. I
know with this "brain fog" that seems to be growing worse by the day, I
tend to find myself "repeating" something that I may have written a few
weeks back. Now, to "take up" for myself, often that is because some new
light has been shed on the subject, or I've gotten more news, did
further research and so forth. Thus I may post on the "same subject"
several times. But, I do find myself "forgetting" much more than I used
to just a year ago. It really concerns me... BUT for NOW I am going to
feel very "elated" that I've made the half way point in my book that
shall be titled "It's Not ME! It's the Disease! ( actually when we
first came up with the title, we almost wanted to ad in "It's not ME
Stupid! It's the Disease! Yet, I don't want to make people feel stupid
or any thing like that... because these illnesses are extremely complex,
and my entire reason for writing them, this one especially is to help
make people understand these illnesses better.... also I am now Kicking
the Can around on making this a "2 Part" book... In other words, publish
this first one, yet move on forward and write #2 - like they both
should follow one then the other.... I am still thinking on that one...
and I'm not sure how I feel about this whole "Volume 1, Volume 2 etc
ordeal... I am not a huge fan of it in the movies, and the only time I
really loved it is in the 4 books "Twilight, New Moon, And The Twilight
Saga, Part 1 and art 2" Those really and truly "fit the bill!" But, of
course I will always be a writer and author and if by the Grace of God
Go I, my intentions of course are to publish more in the future. But,
I've thought about taking a stab at writing "thrillers" based on
"medical things gone bad" etc... there are so many things out there now,
that would make for incredible thrillers with the medical issues today,
that I have really given that I very big possible yes... plus I am
still writing on the "Texas Sayings" so it will of course be much
smaller but I am also going to publish it too....
"Things Remembered" - #HAWMC - WEGO Writers Challenge April 8th 2015
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.
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.
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
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I really have SO MUCH to try & catch up here on, so I am going ton"Post"n some of my ongoing chronic health issues, things abo...
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How can our kids feel safe when WE as adults don't???? I fear Wal-Mart or just walking across the parking lot at HEB in my small lo... -
I finally made a trip to Urgent Care with what I feel is a very bad Lupus and RA flare, but there are several "symptoms" strange t...